My son Sam is a superstar.  He’s outgoing, athletic, loves basketball, sings country music, is learning how to play guitar, and he’s enthusiastic about comedy, conversation, and history. In 2009, I learned Sam was autistic. With a background in social work and child welfare, I imagined I was well prepared. Instead, I had a lot of work to do. 

Sam has blonde hair and is wearing a sweatshirt. He is outdoors, looking at the camera and smiling.

Throughout elementary school and 5th grade, Sam was thriving and enjoying life more than ever. My superstar became a high scoring shooter on a rec league basketball team and was well loved in the community for his outgoing and friendly greetings and comedic conversations.

When Sam started middle school, all of the changes increased his anxiety, and he began to shut down during math class. Unfortunately, his teachers didn’t recognize his high level generalized anxiety, including a physical somatic response, even though it was expressly mentioned in the IEP.

In March of 2015, Sam’s anxiety was at peak level, and he refused to go into the math classroom. At first, teachers offered him time in the “resource room” with the behavioral interventionist. While being escorted to the resource room, Sam “eloped” – he broke away from staff and was immediately restrained on his back on the floor, by four adults – only one of whom had behavior intervention training.

Here is what Sam had to say about this experience five years later (for the full conversation, see  the video):

Daya: So when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.

The day after that one-time restraint, I lost my child as I knew him. Sam couldn’t speak, couldn’t feed himself, was aggressive and self-injurious, and appeared to have regressed to a pre-kindergarten reading level after testing at the 4th grade level prior to the restraint.

Restraint and seclusion changed our entire family’s life, in fact, set it on fire for years. What followed were three years full of aggression, fear, and anger. Sam needed psychiatric medication for the first time ever. He became destructive and even lashed out physically. He was changed overnight because the teachers and staff I trusted to care and educate Sam didn’t have the tools they needed to appropriately and empathetically help him through a mental health crisis.

It’s clear that we need legislation to prevent more children from being harmed in school. On May 26, 2021 Congress unveiled the “Keeping Students Safe Act” to protect students from dangerous seclusion and restraint discipline practices in school introduced by Senators Murphy (D-CT), Murray (D-WA), Casey (D-PA), Durbin (D-IL), Kaine (D-VA), Warren (D-MA), Sanders (I-VT), Baldwin (D-WI), Van Hollen (D-MD), Brown (D-OH), Blumenthal (D-CT), Wyden (D-OR), and Duckworth (D-IL):

“The Keeping All Students Safe Act would make it illegal for any school receiving federal taxpayer money to seclude children and would ban dangerous restraint practices that restrict children’s breathing, such as prone or supine restraint. The bill would also prohibit schools from physically restraining children, except when necessary to protect students and staff. The bill would better equip school personnel with the training they need to address school-expected behavior with evidence-based proactive strategies, require states to monitor the law’s implementation, and increase transparency and oversight to prevent future abuse of students.”  

Today, even during these Covid-19 days, Sam is beginning to thrive again. He’s now in the 11th grade, and has mostly rebuilt the skills he lost while he navigates his world academically and socially with autism. He continues to play basketball (when there’s no pandemic), and has regained most of his verbal skills. He’s a growing self-advocate who wants to help ensure laws are passed to make restraint and seclusion illegal. 

Once again, in Sam’s own words: 
Daya: So what would you tell Congress about restraining in school;
remember we're talking about the bill called Keeping All Students Safe Act.
So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.

It’s our wish that other families be protected by federal law from such a traumatic course of events. We have all been changed by this experience, and in hindsight, the trauma caused by the restraint could have been prevented by such easy and deliberate choices such as employing better practices in crisis intervention – just as KASSA provides. Federal legislators have introduced restraint and seclusion bills since 2009! The Keeping All Students Safe Act was first introduced in 2011, with  iterations reintroduced in 2015 and 2018 without passage in the Senate. It’s time to see this pass!

To advocate for Keeping All Students Safe Act, Sam recounts the story of his restraint and seclusion.
Transcript:
Daya: Alright, how old were you when you were restrained?
Sam:  12
Daya: what grade was that?
Sam: Sixth.
Daya: How come you were restrained?
Sam: I was being dangerous and ran away.
Daya: Oh! You ran away. 
Sam: Yeah.
Daya: Okay so you ran away from where?
Sam: The resource room. 
Daya: Why were you in a resource room?
Sam: Because I didn't want to go to math with Mr. Parker.
Daya: What were your feelings about math?
Sam: Hard. 
Daya: Okay, so when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.
Daya: All the stuff you learned from kindergarten, right?
Sam: Right. 
Daya: So what would you tell Congress about restraining in school; remember we're talking about the bill called Keeping All Students Safe Act. So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.
Daya: Okay, well thank you very much for this interview. I appreciate you talking about such a hard thing. 
Sam: Bye-bye.

---

Daya Chaney Webb is a Little Lobbyists Ambassador and Sam’s mom. She has a background in social work and child welfare, and is an expert in special education law and IEP development and implementation. She has helped other parents as a volunteer family advocate. The absence of legislation protecting kids with disabilities in school led her to lobbying work, most recently with The Alliance Against Seclusion & Restraint as Legislative Director.

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. 

---

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.]

---

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.]

---

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. 

---

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.

---

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]

---

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.  

---

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

---

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.

---

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.

---

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.

---

Jeneva Stone is the blog manager for Little Lobbyists.

At Little Lobbyists we know our most powerful advocacy tool is our vote. My own children, Collin, Bridget, and Abby, have learned from a very young age that advocacy is not just about working with the legislators you have, but about electing the right people for the job. This year, with so much at stake for our families, supporting and electing candidates to all levels of government who will fight for our children with complex medical needs and disabilities is critical. 

As the Pennsylvania State Chapter Leader, I am proud to announce that Little Lobbyists Pennsylvania endorses the following candidates for the United States House of Representatives. These candidates have demonstrated a commitment to supporting health care, education, and community inclusion for kids with complex medical needs and disabilities. Each of these candidates has a strong commitment to the Affordable Health Care Act (ACA).

Image description: Blue graphic with Little Lobbyists Pennsylvania logo at top. Text reads: “Little Lobbyists Pennsylvania endorses the following candidates for the United States House of Representatives who have demonstrated a commitment to supporting health care, education and inclusion for kids with complex medical needs and disabilities.” On a lighter blue square candidates’ names, districts & photos: “Madeleine Dean (PA-4), Mary Gay Scanlon (PA-5), Chrissy Houlahan (PA-6), Susan Wild (PA-7), Matt Cartwright (PA-8), Eugene DePasquale (PA-10), Kristy Gnibus (PA-16), Conor Lamb (PA-17), Mike Doyle (PA-18). Bottom text reads, “Advocating for kids with complex medical needs and disabilities. www.littlelobbyists.org”

Madeleine Dean standing with Erin & Bridget. Abby is using her speech generating device.

Madeleine Dean (PA- 4), the incumbent, is always receptive to Little Lobbyists families. She has proven to be a true ally for our children with complex medical needs and disabilities, supporting legislation to defend and strengthen the ACA, as well as supporting the Elijah Cummings Lower Drugs Costs Now Act (H.R. 3). She is an original co-sponsor of the CHIPPER Act (H.R. 6797), which would increase federal funding for CHIP programs andsafeguard children’s access to health care during the pandemic. Little Lobbyists mom Christine says, “Madeleine Dean appreciates the inherent value of all individuals, and the need for everyone to be included in their community. She recognizes disability as one aspect of diversity, and understands that health care and education are rights and a vehicle for all Americans to live full lives.”

Mary Gay Scanlon is seated between Kevin and Abby, who are both in their wheelchairs. Little Lobbyists moms stand in the back, with Collin at center.

Mary Gay Scanlon (PA-5), the incumbent, began her advocacy for children at  the Support Center for Child Advocates, where she has served as a volunteer attorney or board member since 1985. Her work continued as an attorney for the Education Law Center of Pennsylvania, where she fought for access to a quality public education and the rights of students with disabilities. At the Education Law Center, she led two class action lawsuits to enforce the rights of students with disabilities. As a congresswoman she focuses on disability rights and voting rights, supporting legislation to strengthen the ACA and lower the price of prescription drugs through the Elijah Cummings Act (H.R. 3). Congresswoman Scanlon authored the Disability Voting Rights Act (H.R. 1573). She regularly welcomes Little Lobbyists for meetings and genuinely listens to our concerns, as well as those of the broader disability community. At her disability town halls, she’s invited Little Lobbyists families to share their stories. Little Lobbyists Freida, age 14, says, “Mary Gay Scanlon cares that I have a future. I admire her for her hard work in making sure I have one.” Little Lobbyists know that Congresswoman Scanlon will continue to listen to and advocate for children with complex medical needs and disabilities.

Chrissy Houlahan stands with Little Lobbyists moms Lisa and Sharon as well as Bridget. Abby is seated in her wheelchair and clapping her hands.

Chrissy Houlahan (PA-6), the incumbent, has been a  strong advocate for affordable healthcare, working to support and improve the ACA through her co-sponsorship of the Protecting Pre-Existing Conditions & Making Health Care More Affordable Act of 2019, the Middle Class Health Benefits Tax Repeal Act of 2019 (H.R. 748), and the Strengthening Health Care and Lowering Prescription Drug Costs Act (H.R. 987). Her constituents report that she is focused on serving the people of her district. Little Lobbyists mom Victoria says, “Representative Houlahan truly cares about her constituents and takes the time to respond to us in a thoughtful way, always keeps us informed, and asks for constituent feedback on important issues.” Little Lobbyists mom Lisa adds, “She is a force to be reckoned with and a joy to have as the voice of her constituents.” Little Lobbyists mom Sharon says, “She hires staff members who share her warmth, intelligence, and empathy, which makes her office a reliable and effective resource we can count on. Her directness and action-oriented manner are refreshing, and it is a joy to work with her.”

Susan Wild speaks outdoors at a podium

Susan Wild (PA-7), the incumbent, has worked tirelessly  on health care issues, including the rights of people with mental health disabilities. Susan is the author and original sponsor of the CHIPPER Act (H.R. 6797), which would increase federal funding for CHIP programs andsafeguard children’s access to health care during the pandemic. She is a sponsor of the Expanding Disability Access to Higher Education Act (H.R. 4577), as well as numerous other bills. She has spoken at many events in defense of our families’ access to affordable health care. 

Congressman Matt Cartwright (head shot)

Matt Cartwright (PA-8), the incumbent, has worked tirelessly to protect the ACA, as well as expand Medicaid. Congressman Cartwright also supports the expansion of disability rights through the Disability Integration Act (H.R. 555), which would give people with disabilities the choice to receive care at home instead of in a nursing home or institution--something that has become increasingly important during this pandemic. Protecting people with pre-existing conditions has been Congressman Cartwright’s top priority since he first ran for Congress in 2012, and Little Lobbyists families know we can rely on his steadfast advocacy for ACA protections for our children with complex medical needs and disabilities. 

Eugene DePasquale (center) standing in front of a blue curtain with a group of Little Lobbyists Pennsylvania families.

Eugene Depasquale is challenging Congressman Scott Perry (PA-10). Congressman Perry has repeatedly voted against our families, including multiple votes to repeal the ACA, while Eugene Depasquale grew up as the sibling of a child with complex medical needs and disabilities, so he understands first hand how policies that affect health care and disability rights can impact a family’s ability to survive and thrive. He has made defending the ACA a priority in his work as Auditor General, and now in his congressional race. Little Lobbyists are excited about his candidacy and the work he will do in Congress on behalf of our families.

Abby meeting Kristy Gnibus at an outdoor event. Abby is seated in her wheelchair between Conor Lamb, kneeling beside her and wearing a face mask, and Kristy Gnibus, wearing a mask that says “Vote.” Abby is smiling broadly and reaching out to touch Gnibus’ face.

Kristy Gnibus is challenging incumbent Congressman Mike Kelly (PA-16), who has repeatedly voted to repeal the ACA. Kristy Gnibus is a mom, teacher, and a cancer survivor who understands what Medicaid and the protections of the ACA mean for families. Affordable health care and a good education for every child are the top priorities of her campaign. She understands first hand the difficulties of navigating the pre-ACA health care system and what is at stake if we lose the ACA now. She believes it is important to lower the cost of prescription medications, so she supports the Elijah Cummings Act (H.R. 3).  Kristy Gnibus has gotten to know Little Lobbyists families and listen to our stories and concerns. In speaking with Kristy, I have found the rare Congressional candidate who already understands, on both personal and policy levels, just how critical Medicaid is to so many families, and especially to Pennsylvania families of children with complex medical needs and disabilities. Kristy Gnibus really gets it, and I know she will hit the ground running when she gets to Congress.

Conor Lamb drumming on his desk in Washington DC with Abby seated in his chair drumming excitedly along with him. Both are smiling broadly.

Conor Lamb (PA-17), the incumbent, has been a tireless ally for Little Lobbyists families, always making time in his schedule to listen to our concerns and proactively seek our opinions on new legislation. Congressman Lamb was one of the first legislators to speak out against the Administration when it tried to deport children with complex medical needs who came here legally for life-saving medical treatment. He is one of the original cosponsors of the CHIPPER Act (H.R. 6797). He has repeatedly defended the ACA and voted for the Elijah Cummings Act (H.R. 3). Conor Lamb has taken the time to develop relationships with and really listen to our children, giving them confidence to advocate for themselves and their friends at the highest levels of government. 

Mike Doyle standing (center) with several Little Lobbyists families in his local district office.

Mike Doyle (PA-18), the incumbent, has been a consistent advocate for health care, and for families of children with disabilities. He regularly makes time to meet with his constituents, including Little Lobbyists, to discuss the issues affecting us. He is the original author of the Autism CARES Act (H.R. 1058) and has been working alongside the disability community to adapt this legislation to be more responsive to the needs of autistic individuals across the lifespan. Little Lobbyists Pennsylvania is confident that Mike Doyle will continue to learn from and work alongside the disability community, fighting for the affordable health care our children with complex medical needs and disabilities need to survive and thrive. 

Little Lobbyists Pennsylvania is proud to endorse these candidates for the United States House of Representatives. We ask that you offer them your support, and most importantly your vote, so that they can fight to protect the health care, education, and community inclusion children with complex medical needs and disabilities need to survive and thrive. 

---

Erin Gabriel is Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania.

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.

---

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. 

---

 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.

Emma Staggs, a young girl with blond braids and a blue dress with a watermelon slice pattern, holds her AAC device in its bright pink case. Emma is seated on play equipment in a backyard.

I love the sound of my daughter's voice. Like any mama who adores her kiddos, the sweet, small sound of their voices are music to my ears.

My twin girls, Emma and Sara, will celebrate their 7th birthday later this month. They are happy, rambunctious, curious and remarkably loud! Our family, like millions of others across the country, is navigating distance learning in all its online glory. Also, like millions of families whose kids have complex medical needs and disabilities, we have been at home since March. Our visits with aunts, cousins, and grandparents have been via video calls. In a world that leans into technology, we are more immersed than most, for an incredibly important reason: Emma speaks through an Augmentative and Alternative Communication (AAC) device.

Among the list of pre-existing conditions that arose from extremely premature birth and prolonged intubation (months on a ventilator), Emma has idiopathic bilateral vocal cord paralysis (iBVCP), which means that her vocal cords are essentially stuck together, so they do not produce sound. She has a breathing tube and a feeding tube that were surgically implanted when she was 3 months old. These procedures saved her life and offered a path to hospital discharge so I can raise her in our home, with our family. 

Apart from a breathy exhale or gurgly, boisterous belly laugh, she doesn't produce any sound.  And sure, she's under the care of multiple specialists. There is always hope and, in fact, 75% of children with iBVCP gain their voice by age three. Can you imagine? They just wake up one day, singing like a bird! Again, Emma and her sister will be 7 this month, so she is part of the remaining 25% that haven’t gained their natural speech.

My husband and I have done what all parents do for their children. We find the tools they need to meet their fullest potential. For Emma, and kids with a similar diagnosis, a big part of that is her AAC with voice output. It looks like a pumped-up iPad, but with specialized hardware and software and a pink protective case so she can safely carry it everywhere she goes. It has a series of pages, with grids and pictures on each page. When she taps each individual grid, the software causes an approximation of a young girl’s voice to speak the word associated with the picture. Thankfully, technological advances allow the voice to sound more assimilated and much less robotic. It literally sounds like her (or what I imagine to be her voice)!

Emma’s AAC device, which resembles an iPad and is in a pink case. The screen displays icons for various colors, and below it is a sketch pad on which Emma has drawn colorful flowers with markers and written her name.

Here's the thing, it's AWESOME! As she learns to navigate this tool, her world expands. She can better communicate her wants and needs, her likes and dislikes. She can touch buttons that sing her favorite songs in sections. She can greet her family and nurses, tell us when she wants to take a break or needs her breathing tube suctioned. It even helped with potty training! When her teacher asks questions during online learning, she can respond. In conjunction with American Sign Language (ASL), she is included in the learning and social exchanges that happen throughout the school day.

As she grows, the device will grow with her, which is fortunate because it came with a $6,000 price tag, covered by Medicaid after months of paperwork, letters of medical necessity, and therapeutic justification from her therapists. The difficulty is worth it: I think most of us agree that communication is a necessity, a human right, and something we should make all attempts to provide. I would argue that vulnerable and marginalized people need to use their voices even more.  

We are preparing Emma to be a successful self advocate. On that glorious day when her proficiency, tools and abilities to speak her wants and needs to a society with the grace to listen, nobody will be more relieved or excited than her family.

But I have to admit, my favorite part is when she pushes the button that gives the voice command to say, "Hi Mommy. I love you." That is music to my ears.  

---

Stacy Staggs is Little Lobbyists’ National Director of Community Outreach and its North Carolina Chapter Leader.

Bob Williams seated in his wheelchair, which has a mount supporting his communication device. Bob is a white man wearing a white suit jacket with a pink striped shirt and a bowtie.

As far back as I can remember, I have always found ways to express myself that others can understand. It is why I escaped the discrimination others still endure.  

I have significant motoric, and speech, disabilities due to cerebral palsy. On the wall of my office hangs a piece of wood with the alphabet and numbers zero through nine stenciled in black. It is there as a reminder of both the journey I have been on over the past 63 years and the large debt I am paying forward.  

I believe my life, while molded by many factors, has been possible by the love and belief that my family and others have had in me. From a young age, I had a ready supply of ways to communicate and connect. My Mom said that she knew I could keep a beat and had things to say when I pretended to lead a band or played 20 questions, beginning as a toddler. At six or seven, I learned to type on an IBM electric typewriter, which convinced my doubtful teacher that I could both read and write.

When I was about 15, my camp counselor painted the alphabet in bold black capital letters on that piece of wood hanging on my wall. I pointed to the letters to spell out words and sentences. A year or two later that same camp counselor handed me a green board that had letters, numbers, words, and phrases on it. It was called the Hall Roe Communication Board, named for the man with cerebral palsy who helped design it, and it saw me through high school, college, dating, internships, and my first two full-time jobs. In fact, I used that board to lobby with others to gain passage of the Americans with Disabilities Act (ADA).  

Bob’s first communication board: a piece of brown wood handprinted with the alphabet in capital letters and the numerals 0 through 9.

Just after the ADA became law, I participated in the Augmentative Communication, Empowerment, and Supports (ACES) Institute at Temple University in Philadelphia. There with about a dozen other people who used AAC, I learned to use my first speech generating device. I have been using successive iterations of this same device throughout my life.  After that my life and career took off in directions even I had never before fathomed possible.  

ADA AND THE RIGHT TO COMMUNITY 

For me, the penultimate purpose of the ADA is best summed up in four words: The right to community. I want to be clear; I did not say “the” community. I said, the right to community: To be a part of, not apart from, life.  

Congressman John Lewis’ last words to America, printed in The New York Times on the day of his funeral, were these: “Democracy is not a state. It is an act.” I believe he meant democracy is not just some fancy-sounding noun we use. Not something we should dare take for granted. Rather, it is a verb--the action we all must engage in known as E. Pluribus Unum, each doing of our individual and collective parts to create and nurture. One out of many. 

I believe the same is true of community. Community is not merely a place on a map. It is an act that we all must engage in and take responsibility for, together. It is the action of communicating, connecting, and being in community with each other. 

I often ask all kinds of people what they see the purpose of the ADA as being. Predictably, they say that it is to eliminate the architectural and other design barriers many of us encounter. I reply this is true as far as it goes. But I then point out that the fundamental aim of the law is to continually chip away at and to eradicate the pernicious, deeply entrenched biases that are the root reasons for these barriers, as well as other forms of discrimination, including speech discrimination. 

Progress clearly is being made, but far more work remains to be done. Thirty years ago, when many of us were working on the passage of the ADA, we referred to accessible transportation as the linchpin of community integration.  

Today, effective communication is that linchpin. Absent that, there is no community, there is no real integration. Where we live is critical, but merely being present is not sufficient. Absent the opportunity, tools, and strategies we need to communicate, connect, and live with each other, as part of one another, we are all forced to live separate and apart from each other. 

A Hall Roe Communication Board. Image of a board with a blue background covered in sections of black type that include commonly used words and phrases, as well an as alphabet.

SPEECH DISCRIMINATION

To this day, there is no question that children and adults who cannot use our own natural speech to effectively express ourselves continue to experience higher risk of unjustified institutionalization, segregation, and isolation; abuse and violence; widely disparate education, employment, and health outcomes; and the routine violation of our liberties, the power to express ourselves, and to decide how we live our lives. 

The ADA offers two sets of requirements that I strongly believe we must increasingly leverage to challenge and put an end to it. The first of these is the right to effectively communicate. The ADA requires that people with disabilities that impact their ability to communicate (whether expressively, receptively, or both) must be afforded the opportunity, tools, and supports necessary, in the words of the Justice Department, “to equally and effectively communicate with others.” 

The second set of safeguards are those commonly referred to as the “integration mandate” of the ADA and affirmed in the Olmstead decision, which require that people with disabilities not be institutionalized, segregated, or otherwise isolated, and that they must be afforded the opportunities and supports to take part in every facet of the American community.  

For too long, far too many children, working age persons, and older adults who need, but lack access to augmentative and alternative communication strategies and related supports have been isolated and excluded from much of life. I believe we can and must shatter the injustice of silence by using both sets of these protections to advance and secure a true right to community. 

Communication is never a one-way street. Community is not an island that we exile someone to and declare they are integrated. For too long, we have placed the onus for communicating solely on the person with the greatest challenges. I have seen, as I am certain you have, how this has played out in the lives of many folks with intellectual and developmental disabilities, who I have known, loved, and learned the most from. We must expose and end this most endemic and devastating bias. As Anne McDonald, who spent most of her life on the back ward of an institution in Australia, wrote, there is no way for someone that is speechless and trapped to connect and communicate if others do not help them to make that leap. The ADA, in my view, must become the powerful launching pad that enables us to make that great leap, together. 

---

Image of the Communication FIRST logo, blue and green speech bubble icons intersecting. The intersection is black with white lines that symbolize text.

Bob Williams is the Policy Director of Communication FIRST, and has advanced the rights, opportunities, and supports for children, working age persons, and older adults with significant disabilities for over 40 years, including creating community living services in DC, helping to pass the  ADA, and administering the federally funded developmental disabilities and independent living networks. 

Photo of Alice Wong, an Asian American woman in a power chair. She is wearing a blue shirt with a geometric pattern with orange, black, white, and yellow lines and cubes. She is wearing a mask over her nose attached to a gray tube and bright red lip color. She is smiling at the camera. Photo credit: Eddie Hernandez Photography

Jeneva is thrilled to interview Alice Wong (she/her), a disabled activist, media maker, and consultant. Alice is the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. She is also the editor of Disability Visibility: First-Person Stories from the Twenty-first Century, an anthology of essays by disabled people, a book Jeneva has been reading.

Tell me about yourself. 
I’m the daughter of Chinese immigrants and the oldest of three girls. We grew up in Indianapolis, Indiana, and I loved to read and write as a young person. The library was one of my favorite places in the world. As a disabled kid, it was a refuge. When I was a teenager, I knew that life was going to be better for me in California, so I moved to San Francisco for grad school in medical sociology, worked at UC San Francisco as a staff research associate for about 15 years, and ended up working full-time with the Disability Visibility Project a few years after creating it in 2014. And here we are now! I did not expect this path in my life, but am loving every minute of it. I am now who I have always meant to be. 

Tell me about your medical needs and disabilities.
I have had a neuromuscular disability since birth and could walk until age 7 or 8, and I then used a manual wheelchair and quickly transitioned into a power chair. Over the years my body has weakened, so I started using personal assistance services full-time and using a Bi-Pap machine to help me breathe. At first, I only needed the Bi-Pap, a form of non-invasive ventilation, at night, but using it all day gives me more energy and ventilatory support so I can keep doing what I want to do. 

Image of the cover of Disability Visibility: First-Person Stories from the 21st Century. The cover is a set of overlapping pink, purple, blue, green & yellow triangles, over laid with black sans-serif text.

Tell me about the origin of the Disability Visibility Project: When did you first imagine it? What did it take to get it rolling? How did the book evolve?
Originally it started as a one-year campaign to collect oral histories from the disability community in the lead-up to the 25th anniversary of the Americans with Disabilities Act in July 2015. I formed a community partnership with StoryCorps, an oral history nonprofit because I wanted us to have a chance to tell our own stories and create our own history. I initially thought I would interview people I knew who I thought were super interesting and cool in the SF Bay Area, and by using social media I was able to encourage disabled people across the country to participate as well. Right now people can still participate by using the StoryCorps app, and information can be found on my website. The DVP has grown and evolved into other activities such as guest essays, Twitter chats, a podcast, and other collaborations. I self-published an anthology in 2018, Resistance and Hope, and for the 30th anniversary of the ADA, I published a series of essays by disabled people of color on my website called #ADA30InColor with an audio and plain language version. 

 Disability Visibility:  First-Person Stories from the Twenty-First Century came about when an editor from Vintage Books, Catherine Tung, emailed me out of the blue in 2018 asking if I had any interest in working on an anthology and I said, “YES!” After developing a book proposal and finding an agent, I got a book deal with them and worked on it for about a year and a half. This book is a labor of love by me for all of us. There’s a free discussion guide and plain language version on my website by disabled writers Naomi Ortiz and Sara Luterman, respectively. I hope it gives people some comfort and joy during these difficult times.

In your introduction to Disability Visibility (the book), you write, “To me, disability is not a monolith, nor is it a clear-cut binary of disabled and non-disabled. Disability is mutable and ever-evolving.” How do you hope “disability” will be imagined, categorized, or defined 100 years from now?
I’m so excited and ready for the future! I believe disability will expand and change–technologies and other adaptations may change our lives, but that doesn’t change the fact we are disabled in biological, cultural, or political ways.  

You also write, “Storytelling can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change.” Storytelling is at the heart of Little Lobbyists—telling the stories of our children and helping our children tell their own stories. For some of our children, telling their own stories will be easier than for others. What can we, as parents, do to assist our kids with the essential task of self-narrative?
I would encourage parents to help their children discover their interests and passions. When you care about something deeply, it becomes part of your story and advocacy. I strongly believe each person can tell their story in their own way, whether it's from visual communication, gestures, or facilitated by a person or assistive technology. It's our responsibility to one another to not place certain forms and formats as “better.” We should meet people where they are in the ways they choose to communicate with the world.

 It’s important to remember  there will be a lot of kids who do not feel comfortable expressing themselves or being an advocate just yet and that’s ok! It took me until my early 20s before I thought of myself as an advocate. Also, no disabled person should ever feel obligated to be an advocate or tell their story–this should always be a voluntary activity. On another note, I was not able to express my anger and sadness as a child because I had to be this “compliant” patient and child. I grew up very fast and performed in front of adults to meet their expectations. There needs to be space for kids to share their stories and feelings even if it’s not what parents or the public expect.

 What do you consider your first act of self-advocacy?
It’s hard to remember because like so many medically complex and disabled kids, I had to be an advocate at an early age before I ever knew the word. It was a means of survival in a world where I was made to feel acutely different. I had great parents and social support, but they could not understand my experiences. One of my first public acts of advocacy was writing a letter to the editor of Time magazine in the 1990s about accessible public transit, and it might have been the first time I wrote about a disability issue. And it was printed in the magazine, so that was a thrill! 

 How has advocacy shaped your life and given meaning to it?
Advocacy became less about my own individual needs and more about structural and institutional change. Advocacy connected me to communities and other people who had similar goals. I’ll always be thankful for being part of so many amazing communities because we are truly powerful when we work together.

 If you could define advocacy in a single sentence, what would that be?
Advocacy is telling your truth and caring for others. 

You can follow Alice Wong on Twitter @SFdirewolf @DisVisibility, and on Instagram @disability_visibility

---

Jeneva and her son Rob: Jeneva is wearing a blue scarf and grey dress, and Rob is seated in a wheelchair with an orange shirt and orange baseball cap.

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a recurring feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College. 

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?

---

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

“Back to school” has been my favorite time of year since I was a kid looking forward to new friends, activities, things to learn, and (my favorite) school supplies. As a mom, I still look forward to the promise and potential a new school year brings (and I still love buying school supplies).

COVID-19 has made this back-to-school season quite different. Instead of selecting lunch boxes and folders, parents and teachers are sorting through complex strategies for school “reopening” (in-person, hybrid, or remote?!). We’re asked to decide which is worse: risking our children’s health or their education? Instead of feeling excited, this year I’m trying to decide if I’m more terrified, or more furious. 

My son Simon loves to see his friends and teachers at school and push his walker to top speed in running club. He also has cerebral palsy, hydrocephalus, epilepsy, autism, vision and hearing loss, physical and cognitive disabilities. Simon depends on school for therapy and education. He needs in-person support to keep from regressing in every area. 

Like many of our Little Lobbyists, Simon’s health conditions put him at-risk if he’s exposed to COVID-19. He’s part of that “less than 1%” the President and his supporters cite as unfortunate collateral damage when they demand – with threats of defunding education – that we physically send our children back to school during a pandemic. 

Since schools have begun to re-open, almost 100,000 children have been infected with COVID-19. We’re learning that kids can become seriously ill and some do die. I would have hoped the avoidable loss of one child’s life, regardless of pre-existing health conditions, would be one too many for our president. But I was wrong, and I am terrified. 

I’m terrified because we’re being told by our Nation’s leadership that we must learn to live with a rapidly spreading pandemic, get back to work, send our kids back to school, and hope everything will be okay. I see people ignoring public health experts and I see the resulting outbreaks of contagion. On our current course, I’m forced to wonder how many empty chairs our families will have around the table this holiday season. 

Seeking guidance, I asked my family’s pediatrician about sending my kids back to school, and this is what he said – “Our country’s response to this pandemic has made us the laughing stock of the world. In our Nation, this public health crisis has been politicized to the point that even CDC guidelines on opening schools is a joke. We are on our own.” 

He added that we don’t understand COVID-19 well enough, or have the resources we need, to keep our children safe in schools. While many kids don’t get sick, some become very, very ill. We don’t know the long-term effects of this virus in our systems. Our states and our schools don’t have the basic resources they need for testing or contact tracing, nor PPE, nor even cleaning supplies. 

He acknowledged that parents are in a terrible spot. We must choose between our children’s education and protecting their health. Working families, families of color, and families of kids with disabilities should never be forced to make these impossible decisions. Our pediatrician added, “If your child is one of the ones who gets sick, or if they spread the virus to teachers or staff or other family members – will you be able to live with the choices you made and the risks you took?” 

For me, the answer is no. My child’s life and the lives of our loved ones and community members are precious. But for the President, his administration, and so many in the GOP leadership, the answer is “yes” – and so, I am furious.

I’m furious because it didn’t have to be this way.  Other countries have been able to contain the virus, control its spread, safely reopen and send kids back to school – but we can’t.  In the United States, infections are rising, ICUs are filling, and people are dying. Why did we shut down our country this spring if we were going to reopen before the virus was controlled - throwing in the towel as soon as the President felt it was hurting his poll numbers? 

I’m furious because during a pandemic, when families need secure access to health care most of all, the Trump Administration is still trying to overturn the health care protections of the Affordable Care Act in the Supreme Court – protection my family relies on. I’m furious because the House passed the HEROES Act COVID-19 legislation in May – which provides funding for school systems, COVID-19 testing and tracing, hospitals, unemployment, nutrition assistance, home and community supports for people with disabilities, and so much more – and Senate Leadership won’t even discuss it. 

I’m furious because doctors and scientists are being muzzled and disparaged, because the President told our country to ingest bleach while my kids watched on TV, because  – as my pediatrician said – at the moment we most need trustworthy, compassionate, and competent leadership to protect our families’ health and futures - we are on our own.

I hope we won’t be on our own much longer. As we face this crisis, though I am terrified and furious, I’m also determined. There’s a general election coming and I will vote like our children’s lives depend on it. Because they do.

Laura LeBrun Hatcher is Simon’s mom and Little Lobbyists Director of Design and Communications.