Abby had a history of seizures, but this one was very different. 

The snow had been falling steadily outside the window as another winter storm moved in over our rural town in western Pennsylvania. My husband, a pilot, was away on a business trip, and I was just getting my preschooler ready for bed after a long warm bath. It felt like a perfectly cozy winter night. I laid her down on her bed, wrapped in a soft bath blanket, while I picked out some pink pajamas with little polar bears on them. As I looked back at her I saw it. Her body was stiffening and shaking while her eyes were vacant. It only lasted about 30 seconds, but it felt like an eternity. 

After that night, Abby’s team started documenting more and more seizures. Her neurologist believed she was having upwards of 30 seizures a day that we just weren’t able to see. Her team started to warn of seizure progression. So we hopped on the merry-go-round of medication trials. One after the other. Carefully weaning onto and then off of each one. One made her sleep all day, and the next showed no seizure control at all. A third made the seizures worse, and so on. 

Abby lived her life in the fog of the nearly continuous seizures, combined with the medication-induced fog of whichever drug we were trying now. We finally settled on one, but we had to continually increase the dose and Abby lost weight and seemed regularly more tired, as the medication stole her appetite and energy. 

Photograph of Abby, a 6 year old girl wearing an Elsa nightgown, glasses and bandages around her head wrapping up EEG wires while sitting in a chair next to a hospital bed holding Mickey Mouse and Minnie Mouse dolls.

As Abby’s seizures progressed, we decided to add CBD, and, later, THC, the two main components of cannabis. The effect was dramatic. The seizures all but disappeared. A year and a half after adding THC, her team at a world-renowned medical center decided to try taking her off of her pharmaceutical medication. In order to do this safely, she had to be admitted as the medicine slowly worked its way out of her system. They kept her hooked up to IVs and a continuous EEG for the entire admission--just in case, they told me. They wanted to be able to intervene quickly. They slowly titrated down and eventually stopped her medication. Then we watched and waited. 

Stopping a pharmaceutical epilepsy medication can be very similar to weaning someone off of heroin or other opioids. These medications are powerfully addictive, and the risks of stopping them suddenly include triggering massive seizures or even death. Cannabis is not physically addictive. You can safely stop taking it without any adverse reactions. Once Abby’s team felt satisfied that it was safe to discharge her, they sent her home with instructions for only one medication--the one that they said was the safest and most effective for her--medical cannabis. 

With the pharmaceutical drug out of her system, she became more alert, got her appetite back, and friends and teachers immediately started commenting on how different she was-- more engaged, more alert, happier, and more energetic. After spending half of her life on a medication that was sapping her of energy, we were suddenly treated to the full feistiness of our spunky little one, and it was amazing.

We cannot cross state lines with Abby’s cannabis while it is federally illegal. When we started her on THC, it was with a letter from the state of Pennsylvania guaranteeing safe harbor inside state lines, but nowhere else. Many families, including ours, use cannabis not just as a regular daily medication, but often a rescue dose during a seizure. Leaving it at home is not always an option.

Traveling with medical cannabis presents a host of legal challenges--especially if you happen to cross state lines. Documentation requirements vary from state to state and can be a major barrier to care for many families due to the fees, required background checks, and even banking rules involved. These requirements exist because medical cannabis is still illegal at the federal level. The irony is that all that documentation isn’t required for far more potent medications. Without medical cannabis being legalized at the federal level, there is simply too much legal grey area for families--especially those who are already marginalized and at risk during a traffic stop as we have seen too often. 

Families often have to balance the benefit of a potentially life-saving medication with the risk of losing custody of their medically complex child, and, in some cases, even going to jail.  

No family should have to choose between their child’s health and unjust legal consequences. It is time for our legislators to legalize medical cannabis at the federal level so that our children can have full access to the medication they need to not only survive, but thrive. 

Erin Gabriel is the National Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania. This story was shared with Abby’s permission.

Photograph of Abby, a little girl with brown hair and glasses, now age 11, wearing a pink life vest, seated in the front of a boat on a river, with her hands up in the air and laughing excitedly as though on a roller coaster ride.

Amadou, Zana, and Amy. [image description: A Black family poses on a couch. The dad wears a black & white plaid shirt, the son wears a colorful striped shirt, and the mom wears a gray shirt, her hair pulled back into a bun.]

We must end police violence against Black Americans, and against all people of color, and people with disabilities. The U.S. House of Representatives recently passed the George Floyd Justice in Policing Bill of 2021, which, if enacted, would ban chokeholds and end qualified immunity for police officers. Police violence affects communities of color disproportionately. Data from Mapping Police Violence shows that about a third of those who died in police custody were Black. 

Police violence also has a disproportionate effect on the disabled community--estimates suggest that between 25 and 50 percent of those killed in police custody had a disability. Autistic children and adults are especially vulnerable to police violence due to the common behavior of elopement, which is wandering off to escape anxiety, overwhelming sensory stimuli, or to simply seek out enjoyment such as interesting places or the sensation of running. 

Little Lobbyists Zana’s mom, Amy Koné, explains why she and her husband Amadou fear for their son, a Black Autistic five-year-old. (Zana calls his daddy “DaHee”):

Hiya village.

This one is deep. Like you might need a tissue deep.

 Amadou works outside for a living. He is in a lot of neighborhoods and sees a lot of things.

Today he was in the right place, at the right time.

A little four-year-old boy escaped his house and was running down the street. Amadou pursued him and was able to return him safely home.

So Zana’s DaHee is a superhero!

DaHee would not agree. He would say “I was just taking care of a little kid” and that when he saw this little boy he saw our Zana. 

I am sharing this story because as a parent to a child with Autism, Amadou knew elopement when he saw it. (It is different from a child who is a runaway.)

I also am sharing this story to try to bring some awareness to our society. 

First, If Zana were to ever elope I would NEVER call the police. I am a Black woman, married to a Black man, looking for a little Black boy. We are all three targets. 

I’ll let that sink in.

Our being Black is not surprising to anyone, but I mention it because I need people to appreciate how persistent tensions between the blue people and citizens impact us. I’m sure not all of the blue people are shady but I simply cannot take a chance.

Second, the poor mother was in a state of denial/shame. Amadou shared our story with her and now she knows she is not alone.

The stigma of having a child on the spectrum is sometimes so heavy that parents prefer to not address the condition at all.

Folks, the pressure is at times immense.

I cry myself to sleep many a night despite my acceptance of Zana’s diagnosis from the very beginning (his diagnosis was a relief to me because I could FEEL that something was different).

I can only imagine the storm brewing in a Black parent in denial AND facing the responsibilities of caring for a child on the spectrum.

There are many bright spots of being a parent to a child with Autism. One of them is that our little Zana is a sensory seeker. Extreme behavior makes him ecstatic; he feels ALIVE when he is living on the edge.

Since DaHee loves sports, the two of them have an extra deep bond. Zana loves to be thrown all around.

Folks, let me remind you that hubs is 6’5” and frequently mistaken for a pro football player. Imagine a man this big flinging your 55 lb. “baby” through the air, only to have him land safely on a mattress.

And both are filled with glee. 

I’m thankful Zana has his DaHee.

And that Zana’s DaHee can dig deep (all athletes understand this) when he is absolutely spent from a day of working outside in unpredictable weather to rough house with Zana.

Thanks, as always, for listening and caring about us. This village is phenomenal.

---

Amy Koné is parent to a child with Autism and a member of Little Lobbyists. She currently resides in her hometown, Baltimore MD, with her husband and son. Their family now spans three continents, five countries, and an ever growing circle of friends.

A montage of hand-decorated Little Lobbyists DIY holiday cards.

Like all of us, Laura Hatcher, our Director of Design & Communications, and Jeneva Stone, our Blog Manager, have had to figure out how to make these December holidays as jolly and bright as possible, given the challenges of the present moment. We had some ideas we wanted to share, and we’d love to have you share your ideas for making the season bright, and participate in Little Lobbyists’ advocacy by sending your legislators one of our printable DIY holiday cards or coloring sheets (details below)! 

Laura: This year has definitely been challenging - juggling Little Lobbyists, working full-time, adjunct teaching part-time, virtual home school/therapy and caregiving, while trying to be a good (sane) mom/wife/daughter/friend/human has been ... tricky. I often feel I'm dropping more balls than I'm keeping in the air. BUT, I'm also trying to find ways to appreciate the slow down and be grateful for the blessings I have. For my family, for work I love, for small progress and periods of good health, for yoga videos at home and (socially distant) walks outside with friends, for the ability to keep food on my table and afford extra to share with our weekly community food drive. When I count my blessings I really do feel better. I even try to start my classes by asking my students to share one thing, however tiny, bringing them joy in that moment. 

Laura’s snowflakes. [image description: Above a table set with glasses, flowers and dishes are two windows decorated with paper snowflakes.]

My best pandemic-safe tip for this holiday season - decorate! Add lights, color, greenery, whatever makes you happy inside and outside the home. It doesn't need to be fancy or complicated - just a visible expression of joy, light, and love to surround yourself with and share with each passerby. My favorite decorations are paper snowflakes. They cost practically nothing and I make dozens to tape to the windows each winter. My neighbors say they look forward to seeing them, so I made extra and slipped them into their mailboxes to share a little more joy. Unfolding them is a tiny gift unto itself.

As a Catholic, I observe Advent - a period of anticipation before Christmas. This year, as I count my blessings and make paper snowflakes, Advent feels more meaningful to me than ever before. We've been waiting in darkness for so long - through social and political unrest, economic uncertainty, and a pandemic. But I have faith that with a new administration and a vaccine on the way, 2021 will bring us all great light. 

Jeneva: I second Laura on lights (and decoration)! Over the years, my family has found that getting our outdoor and indoor lights up has helped our spirits. Both Hanukkah and Christmas are celebrations of light. I’m grateful that we’re all together for an extended time this year, as our youngest, Castin, is home from college now until February. 

Jeneva reads holiday stories to her children Castin (l) and Rob (r) in 2012. [image description: Seated on a couch, with a brightly lit wreath in a window above, a mom reads a book to two young children.]

Recently, Castin and I went up to our attic to find a toy from my childhood, which was waaaaay back behind lots of boxes. Making our way through the mess, I began opening some of those boxes and found them filled with artwork and toys my children had outgrown. But these raised happy memories for Castin, so I had a couple of ideas to combat money, isolation and melancholy. Nostalgia can really clear away the blues.

First of all, we’ll be redecorating my 50+ year-old dollhouse as we proceed through Advent, using some scrap materials from around the house, plus some items I’ve ordered online. 

Second, I’m giving some thought to cleaning and wrapping up a few of those old toys and using some for Hanukkah or putting them under the tree as “Blast from the Past” gifts. Even grown-ups love their old toys! And we’ll have something to talk about.

Laura and her son Simon. [image description: A mom and her son, both wearing nay blue Little Lobbyists t-shirts, stand in front of an American flag. The mom points proudly to her son.]

Third, I once read somewhere that you should snap photos of your kids’ early artwork. I’ll make some photo scrapbooks of those masterpieces Rob and Castin made years ago. Online photo services are great resources for books, calendars and photo plaques, which might even make good gifts for far-away relatives (and photo services can ship them out directly).

What has raised my spirits most of all these last months? I’ve felt buoyed by advocacy. While I can’t meet with legislators and others in person, my own volunteer work for Little Lobbyists helps me feel I’m still making a difference.

You, too, can help--print and send a Little Lobbyists’ holiday card to your legislators! There are lots of ways your child can participate: they can color and decorate the card, or write or tell you their own message to include, or you can snap a photo of their beautiful face and paste it in the card’s illustrated frame.

The card bears the message, “Wishing you a New Year filled with health and care when you need it, opportunities to learn and grow, and to be included in your community as the valuable person you are. (The same things kids with complex medical needs & disabilities wish for every day.)”

In our hearts, ALL of you bring us joy! Keep sharing your stories and spreading your truth. However you celebrate, we’re wishing you a very happy holiday season!

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.]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do you know what I did not do?

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

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

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

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

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

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

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

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

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

• No step therapy

• No prior authorizations

• No prescription formularies

• No networks

• No caps on care

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

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

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

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

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

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.  

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

Rico Winston and his son Israel

I am the proud father of an amazing little boy, created and designed by God, individually and perfectly, who has a diagnosis on the autism spectrum, and whose name is Israel. As a man of color raising a little boy of African ancestry who has a diagnosis on the autism spectrum, I worry about my son's future.

I'm concerned about how America and the world will look at him--what inequality and racial divides will be awaiting him? There are two things that Israel cannot change, and these are the color of his skin and the fact that he has a diagnosis on the autism spectrum.

As a parent it is my responsibility to Israel to recognize these two facts that he cannot change. These realities do not make him lesser or greater than another. The only thing that will make him great is the content of his heart and his willingness to accept and find value in others, no matter what differences they may have. I'm teaching him that individuality is a gift, and to accept and appreciate the individuality in each human being.

Each of us has had our pleasant, and I'm sure not so pleasant, experiences during the COVID-19 pandemic. One of the positive factors for me has been the opportunity to learn and observe Israel's strengths and weaknesses, as related to his education. Israel, will be entering the fifth grade this upcoming school year. He is accustomed to being in a physical classroom environment with his teachers and peers. Virtual schooling has created an uncomfortable and unfamiliar learning environment, accompanied with anxiety, not only for Israel, but myself as well. 

While Israel has had a tendency of being easy to please, during the pandemic, he has been a good self-advocate. Israel has been very clear with his occupational and speech therapists about his dissatisfaction with virtual learning, and that he needs in-person instruction. Israel would like to return to school in the fall, but, of course, how the Baltimore schools will proceed is not yet clear. 

As a parent and an advocate for my son, I am committed and obligated to find what fits and works for Israel's educational and spiritual development so that he may develop into the best human being he was created and designed to be. There has been a dirty, ugly reality swept under America's rug for so long, which some cannot see and some continue to ignore, and that is "the wrong color of skin," which has led to racial disparity and injustice. 

However, there has been a resurgence of the awareness that black lives matter, and that black disabled lives matter. I was a little boy when one of the amazing heroes who fought against social injustice and disparity for black lives, people of color, was  murdered. This magnificent hero and man was Dr. Martin Luther King.

In Washington D.C., on 28 August 1963, at the Lincoln Memorial, there was a timeless speech given by Dr. King, entitled,  "I Have a Dream." The sad reality--which makes this remarkable speech timeless – is, as a whole, America and every American hasn't reached that "mountain top," so it's still a dream, Dr. King's dream, and now my dream.

"I have a dream that one day on the red hills of Georgia, sons of former slaves and sons of former slave-owners will be able to sit down together at the table of brotherhood … I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.”

If I had the opportunity to add anything to the “I Have a Dream” speech, this is what I would add:

“I have a dream that...little black boys and black girls will be able to join hands with little white boys and white girls” and that all children, no matter the color of their skin, or if they have autism, are in a wheelchair, visually impaired or hearing impaired, no matter what challenges or differences, that they will be accepted and recognized as individuals, and valued for their unique individuality.

I am raising Israel so that he will be accepting of the color of someone's skin, and accepting of the differences and challenges of others. Some of these differences are apparent, and some are not. 

Tolerance, acceptance, advocating for self and others are gifts that I am sharing with my son. What gifts are you, as a parent sharing with your child? Prejudice and bigotry start at home. Like an inheritance or an heirloom, they are taught and passed down through generations. We all need to ask ourselves, what are we passing down?

There is only one race and we all belong to that one race. No matter our unique individual differences, we all belong to the same race, the only race, the human race.

I want to extend my appreciation and gratitude to Little Lobbyists, for all that they have done and continue to do for my son Israel and all children and individuals who have unique challenges and obstacles, as well as the support they have given me as a parent.

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Rico Winston is a commitee member of the Friends of C.A.R.D (Center for Autism at The Kennedy Krieger institute), a member of The Spark for Autism Community Advisory Council, and the founder & director of The Israel Winston Family Empowerment Corp., a nonprofit organization. He is currently completing the Arc of Maryland’s Partners in Policymaking course to increase his advocacy skills for people with disabilities.

Israel Winston enjoys horseback riding and is currently a student of the martial arts.

Claire and her siblings

Jeneva is excited to interview Jamie Davis Smith, 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.

Tell me about your family. 

My husband and I have four kids, two boys and two girls ranging in age from 5 to 13. We have a very busy and loud house. We like going for walks around the neighborhood, hikes on accessible trails, seeing movies, and going to accessible playgrounds. Our absolute favorite thing to do as a family is go to amusement parks.  

Claire is 13 years old and loves ice cream, being in or near water, puppet shows, people watching, and being tickled by her siblings. She loves school and looking through books (especially if there are pictures of the beach) and fashion magazines.  

Tell me more about Claire's complex medical needs and disabilities. 

Claire has a duplication of chromosome 2. Her syndrome does not have a name because it's so rare, but this syndrome has impacted nearly every part of her body. For example, the hemispheres of her brain are not connected, and her heart is not in the proper place. She has multiple disabilities and is medically complex. She has intellectual and developmental disabilities (I/DD), epilepsy, autism, and asthma, among other health issues. She communicates with a limited number of signs, and by pointing, and is learning to use an assistive communication device. She uses a wheelchair and needs full support for all activities of daily living from feeding to getting dressed.  

You've written a lot about Claire for publication. In the disability community, there's sometimes been controversy when parents write about their children with disabilities. How have you dealt with your own feelings about this? What steps have you taken to protect Claire in your writing?

In all of my writing I try to introduce the readers to Claire and make sure they get to know her. In a way she could be any child. There are some things I do not write about. I do not write about anything that I think would embarrass her or share her worst moments. Sometimes I struggle with this because Claire cannot give me consent to write about her. I was very private before the 2016 election about Claire, but compelled to share more of Claire's story after it became clear that her access to healthcare and education was under attack. At that point I felt that it was in Claire's best interest to speak up about what was at stake. While Claire cannot give consent for me to write about her, as her parent I make all kinds of decisions for her as I do for Claire's three siblings. I may not always get things right, but I always try to act in Claire's best interests and speak the truth. I always try to do what is best for Claire, even if that means speaking some unpleasant truths or exposing some parts of our lives I would have otherwise kept private.   

What's your advice to parents who are seeking to write and publish about their children with disabilities?

If your children can give consent for you to write about them, make sure you have it. Anything that you publish may be around for a long time, and your child may find it one day. Even if you have your young child's consent, remember that as an adult you are in a better position to understand the consequences of writing about something potentially embarrassing about your child (such as toileting issues) or that may have consequences your child may not anticipate. Unfortunately, we still live in a world where people with disabilities are discriminated against, and publicly sharing a mental health issue or autism diagnosis may have consequences for your child later in life. It should be your child's decision whether they want to shoulder that risk of not. In that respect, I’ve  been astounded at the capacity some teenagers and young adults have to understand how sharing their stories can help others, and readily agree to share some intimate details of their lives.  

How have you engaged Claire in self-advocacy, and how do you hope to continue to do so in the future?  

As part of Little Lobbyists, Claire has gone to the Capitol and attended many other events such as press conferences and protests. She is able to quite literally put a face to the attacks on the Affordable Care Act (ACA), Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), and other issues impacting disabled people. She is able to advocate just by showing up and being herself. She loves being around people, and I hope that she continues to enjoy herself while engaging in advocacy.  

How has advocacy given meaning to your life and to Claire's?

We have been able to bring about real change, both nationally and locally. When an accessible swing was removed from our local playground, my writing about Claire and sharing how much she loved the swing resulted in the swing being replaced. When our local elementary school began locking accessible lifts, our sharing Claire's story (including how we were trapped in the school for over 20 minutes while staff searched for the key) helped to make the school more accessible. With the ACA under constant attack, sharing what the ACA has meant for Claire has helped convince both the public and lawmakers of the importance of access to healthcare. I am proud of what we have accomplished, but know that there is still a lot of progress that needs to be made. Nearly everyday we are faced with obstacles in Claire's way, from cars without handicapped placards parking in much-needed accessible spots to able bodied people sitting in accessible movie theater seats to playgrounds that lack accessible equipment. Then there are the larger issues such as attacks on healthcare and special education. Claire and I, along with her siblings, know that we can use our voices to bring about change and make the world a better, more accessible, and more understanding place for Claire.

 If you could define advocacy in a single sentence, what would be your definition?

Advocacy is a way of ensuring your rights and needs are not overlooked, and a way of "bending the arc towards justice," as Martin Luther King, Jr., said. 

In these troubling times, what gives you hope?

I have hope that so many people are speaking up and showing up. I have hope that so many people are outraged at the injustices we see in our economic and healthcare system, which injustices disproportionately affect people of color, resulting in deaths at higher rates from Covid-19 to police violence. I have hope that the action we are seeing in the streets will translate to real change. I have hope that voters will cast their ballots in record numbers this November. I have hope that more people are beginning to realize that they are complicit by remaining silent, because remaining silent favors the status quo.      

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Jeneva and Rob on a visit to the Senate office buildings

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. 

Angela Eilers and her family

I’m a mother of three, living in sunny southern California. I shuttle kids to soccer practice and ice skating lessons. I also worry every day about my children’s access to health insurance. My daughter, Myka, all of ten years old, has accrued over $500k in medical costs, most of these in her first year of life. Myka was diagnosed with an undetected congenital heart defect (CHD) days after her birth. She underwent two open heart surgeries before her first birthday. She will forever be labeled as a patient with a pre-existing condition. Did I mention she’s only 10? 

Myka was diagnosed with her heart defect in September of 2009, just months after the Affordable Care Act (ACA) was introduced in Congress. I watched some of the coverage while in her cardiovascular ICU room after her first open heart surgery when she was just three-and-a-half months old. Even before we knew we had a child with a serious pre-existing condition, I had supported the bill vehemently. A CHD diagnosis was by far the most frightening news we had ever received. Her second surgery was at 11 months old. Surgery never cures a child with CHD. She will live with this condition for her entire life. 

Myka is an otherwise healthy girl. She loves school, her friends, ice skating, and American Ninja Warrior. But. Underneath her tough exterior, she will be monitored by cardiologists for the rest of her life. She will require yearly echocardiograms to monitor the blood flow coming in and out of her heart. 

The ACA created consumer protections for every American, young and old. Before the ACA, people faced lifetime caps and were often denied coverage for having a pre-existing condition, including conditions like Myka has. I was relieved when the ACA passed Congress and was signed into law by President Barack Obama in 2010.

The ACA cleared the way for us to become entrepreneurs in 2013. At the end of 2012, due to the economic downturn, my husband was laid off from his job as a research analyst, and his job provided our health insurance. Before the ACA, employer-sponsored health care had chained us to jobs working for other people. Because we knew the ACA insurance exchanges would begin opening in states by October 2013, we decided to take the leap to start our own business. The ACA meant that, despite having a child with a serious pre-existing condition, we knew would not be denied coverage. 

So we started our own company: Eilers & Krejcik Gaming LLC. It wasn’t all easy. First, we had to use COBRA to extend my husband’s employer-based health plan, and the ACA plan we needed was expensive. But we had no choice: Having access to healthcare was as vital to our family as a roof over our head or food on our table. The ACA doesn’t just provide peace of mind for our family. The ACA helps 135 million other individuals and their families living with pre-existing conditions or chronic illnesses that would bankrupt them. In my congressional district alone, 319,000 people live with a pre-existing condition.

It’s up to parents like myself to protect the health care of children like mine. But we cannot do it alone. We need everyone’s help. The health and well-being of millions of people hang in the balance. I’m a mother doing everything I can to protect my child. I’m no different than any other parent who would move mountains to protect their child. Trump’s effort to overturn the ACA is an egregious assault on the health of the most fragile. We must all hold the Trump Administration and elected officials accountable for this potential loss of health care. 

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Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists.

Last week, Little Lobbyists families were invited to participate in a Senate press conference opposing President Trump’s proposed budget cuts to Medicaid. Following Senators Schumer, Murray, Stabenow, and Wyden, Little Lobbyists member Cristina Perez Edmunds (with her son Oscar by her side) delivered an unforgettable reminder of the power of Medicaid: 

My name is Cristina Perez Edmunds, and it is an honor to speak here today. I am a proud first generation American daughter of a Cuban refugee, and proud mother to my beautiful son, Oscar. Oscar is a strong, happy, beautiful boy, with big brown eyes. He’s about to turn four. He loves books and bath time and has amazing hair. Oscar was born with an extremely rare chromosomal deletion — there is only one other person in the world with the exact same missing genetic material. Because of this diagnosis, Oscar lives with stage three kidney disease, heart disease, and brain differences which have required endless testing, appointments, and even surgeries. He requires a feeding tube for nutrition, as he has trouble swallowing, and is a wheelchair user — although he works extremely hard to gain mobility skills in his many therapy appointments. 

Oscar was born prematurely, and his father and I thought he just needed some time to catch up. Unfortunately, it became clear that we had a much longer road ahead of us than we had anticipated. As parents, our ultimate goal is to raise a son who is independent, and any milestone toward that is cause for huge celebration. 

I want you to think of your own children, asleep at night in their cribs or beds. Perhaps the temperature has dropped in the house, and their blanket has made its way to the other side of the bed. I’d imagine your child might wake up, grab their blanket, get themselves cozy, and fall back asleep. Or perhaps, they’d walk to your room, and say, “Mommy, Daddy, I’m cold, can you come tuck me in?” This is a privilege that many of us parents of medically complex children do not take for granted. 

My child does not speak and does not have independent mobility. He cannot walk to our room in the middle of the night to tell us if he’s cold, or uncomfortable, or having a bad dream. It has taken four years of intensive therapies to get to where we are now. It was a year before Oskie could sit on his own, two years before he could say “momma” and “dada,” three years before he figured out how to move forward in his walker, and, this year, he learned how to scoot forward. 

The opportunity to learn these things comes at a hefty price. An initial consultation for therapy is $500. That’s just for someone to watch him for an hour and discern what he needs from therapy. Each session after that costs about $150 two to three times per week, all year round. The wheelchair he uses costs $6,000, and the gait trainer he has at home is another $4,000. The gait trainer, until a few weeks ago, has been his ONLY mode of independent mobility. Add to that the cost of his formula, which must be administered via g-tube. Just to meet Oscar’s basic needs to eat and to learn how to move, our family is staring at a bill of approximately $30k per year. This total does not include doctor appointments, diapers, ER visits, and the surgeries that lie ahead.  

Thirty thousand dollars per year is someone’s salary. For many families like us, Medicaid is literally a lifesaver. Children like mine require full time caregiving — and may require that for the rest of their lives. This usually means one parent has to quit working, like I did, to care for their child full-time. Without Medicaid, families would have to choose between giving their child the opportunity for mobility or making rent; teaching their child how to speak, or fixing the roof; teaching their child how to eat, or fixing their car. 

Simply put, without Medicaid, families like ours would be bankrupt.

The other night, when we put Oscar to bed, he grabbed his blanket, pulled it over himself, rolled over, and fell asleep. He is able to do that, in a comfortable home, in a comfortable bed, because of Medicaid. 

Yesterday, President Trump released his new budget, including detrimental cuts to Medicaid. This will, without a doubt, reduce, or even eliminate, accessibility to the life-saving benefits that medically complex children, like mine, rely on to survive and thrive.

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Cristina Perez is a New Orleans-based singer and mother to three-year-old Oscar, her medically complex and disabled son. She is focused on using her original music to bring light, love, and awareness to her community and to give a louder voice to mothers of children with disabilities and rare diseases. Her latest single, “Lessons I’ve Learned” was released last year as an uplifting anthem for mothers to turn to when things get rough. Cristina also authors the blog “It’s Not Too Complicated,” where she breaks down the trials and tribulations of motherhood, marriage, and everyday life with a medically complex child.

** CN: hospice care, loss, sibling loss, grief, death of child, description of child death **

February 3, 2020

I am sitting at the IUPUI campus Starbucks. Well, they don’t call it a Starbucks. They call it “Barnes & Noble Cafe” since it’s in the Barnes & Noble bookstore, but they serve Starbucks coffee, make all the same drinks, and sell all the same Starbucks merchandise. The only real difference is that they don’t take Starbucks gift cards. I tried to pay with one for my grande iced white chocolate mocha and the barista regretfully informed me they cannot accept them since it’s a “Barnes & Noble Cafe.” She proceeded to tell me how sorry she is as often students come in with no payment method besides the gift card. She described a student who came in 30 minutes before me and only had the gift card. She said she paid for his coffee. 

She did not offer to pay for mine.

Which is fine. I’m not looking for handouts and I, somehow, have the funds to pay for a $5 coffee. Even so, I wonder if she would have paid if she knew why I am here. What day it is. Why I do all my writing at the “Barnes & Noble Cafe” instead of the comfort of my house not 20 mintues away. How I cannot stand to walk into my own home, quiet and missing its life force. 

February 3, 2019

The process of watching my brother die takes longer than I expect. For starters, I never thought he would make it past age one. Here he is at seven, defying the odds. Having no choice but to enter into hospice on January 1st, 2019, I anticipated him to die within a week. Somehow, he stubbornly stayed alive over a month. He spent all seven years of his life proving everyone wrong and it seems he’s going to do that in death too.

It’s the first Sunday of February. We know we have to “pull the plug,” as they say. He’s been unconscious for over 24 hours. The doctor tells us he’s already gone but the ventilator will keep his body going until it becomes painful. It will be better if we turn it off. He will go peacefully.

My family and I gather around him, holding him as we take the final moments. The hospice nurse, doctor, and music therapist stand nearby, as well as one of his personal doctors who made the trip out to be with us. She didn’t have to, but she wanted to because she loves us and, more importantly, she loves my brother. 

My brain is buzzing as they say it’s finally time. Shut the ventilator off. 

The doctor is supposed to hit the power button. She can’t figure out how. I’m closest and my brain is buzzing, so I hit the power button and the ventilator shuts off and I watch my brother’s lips turn blue and the color drain from his face and the doctor come up with the stethoscope and announce that he’s gone.

The humidifier alarm on the ventilator goes off, a little too late to announce that something is wrong. 

No one can figure out how to turn it off either, so I do that too. 

The panic sets in immediately. My little brother, my joy, the person I have planned my life around, is gone. He’s gone and he’s never coming back and while I know it’s not my fault, I’m the one who “pulled the plug.” 

I hit the button that stopped the air from entering his lungs, that took his body away, that made it so I can never touch his hair or hold his hand or kiss his forehead or hug him tight, tight, tighter. 

Just moments after he was born, I began preparing for this moment. I knew he could be taken away at any point, that he was more fragile than a typical person, but that doesn’t mean I can make sense of why or how this is happening. He’s seven years old. He’s too young to die.

His death is the most peaceful thing I have ever seen. He does not stir or jerk or react in any way. Slow, slow, slowly, he passes away. He was already gone by the time I shut the ventilator off. His body was empty of the soul that made him the most incredible, loving child- the greatest brother in the world. 

Nothing is left but the shell, but the shell is what I recognize. The shell is what I have played with and kissed and hugged all these years. It’s not easy to say goodbye to the shell.

For the first time in seven years, the house is quiet.

No ventilator breathing in the background of conversation. No feed bag for the GJ-tube quietly whirring if you listen hard enough. No Mickey Mouse Clubhouse blasting from the TV. No laughter. No little legs kicking against a wheelchair. No teeth grinding together. No talking. No communication pad giving a response. 

The house is quiet. Too quiet. The world is quiet. 

February 3, 2020

The world is loud. 

I sit in the not-Starbucks. Impeachment trial updates flash on my phone. The Iowa caucus is underway. Coronavirus takes more victims. Another person tries to pay with a Starbucks gift card...

My brother spent his life fighting his genetics, fighting to live. Every day was a testament to his strength and resolve. Every day he proved this world is worth something. He was not expected to live, but he did so anyway.

I am expected to live. 

Despite the pain and emptiness and quiet in my soul, the world goes on. The world remains loud. I can let the pain and emptiness and quiet take me over and drag me away from the world my brother fought to live in, or I can fight. I can be louder. 

As the one year anniversary approached, I spent a lot of time thinking about what I want and who I want to be. What do I want to stand for? How do I want to fight in this world that is, apparently, worth fighting for? The answer is still a work in the making, but I know at least a few things. I know, without a doubt in my mind, that I want to make a difference. I want to create a better world for children like my brother. While my power is limited to the few resources at my disposal, I am going to do what I can. I can share my brother’s story and I can encourage others to be heard, to make sure those in power know we will not stop until every little boy and girl gets to live the longest, best life they can.

I will stand for health care rights so people like my brother can have the treatment and care they deserve. My brother may have been the most stubborn little boy I have ever met, but that resolve alone would not have been enough to keep him alive. Without access to health care and the wonderful doctors, nurses, therapists, and teachers who took care of and provided for him, he would not have survived seven years. 

The Trump administration recently unveiled its latest plan for Medicaid, Healthy Adult Opportunity, which would turn the program into a block grant. By doing this, states would no longer have the federal commitment to serve eligible individuals and families, leaving millions without healthcare. Under the block grant program, states would have the right to cut several benefits, including coverage for prescription drugs, copays, and treatment services. 

Currently, 1 in 5 Americans are covered by Medicaid, including 45 million children. One child being negatively impacted by this plan is too many, but the consequences can easily reach millions. Medicaid is essential for people like my brother to survive and function. Having a special needs child is stressful enough on its own; no family should have the added struggle of wondering how they will afford necessary healthcare and services.

With the upcoming election, I beg you to stay informed of the policies at play. What are the candidates saying? Do they have the interest of the American people at heart? Do you want someone in office who will take funding away from programs that help children thrive and survive? 

I certainly don’t. 

It’s February 3, 2020, and my brain is still buzzing. My brain is buzzing because the fight is not over. My brother showed me this world is worth fighting for. Children with disabilities are worth fighting for. I will fight and I will be heard and I will not stop until those with disabilities have the rights they deserve. 

Call your representatives. Post your stories. Vote in the election.

Be louder than this loud, loud world.

photo of Sydney, the author, with her brother Colton

Antonis Tsapatakis by Nicholas Samaras http://underwater-photography.gr/portfolio-item/athletes/

I’ve seen this meme on Facebook a few times. If you can’t see the graphic, it’s a man underwater, standing beside an empty wheelchair. The caption reads “The power of water. The most beautiful picture you’ll see today.”

People share it because it feels inspirational that water is an equalizer, allowing the man to be “free” from his wheelchair. The media loves a good “overcoming the wheelchair” photo/story!

I’d challenge you to reconsider how you view physical disability though. Many wheelchair users don’t see themselves as needing to be fixed. As one writer said, “words are what confine and limit us – not our chairs, which are actually pretty great.” How might society’s attitudes about disability change if we worked towards celebrating people as they are, instead of viewing physical disability as lesser-than? We’d see less pity and more accommodations, more accessible venues.

Now, I’ve been guilty of this. My son Julian uses a wheelchair part-time. We used a stroller for years, past the age most kids stop. When he outgrew his umbrella stroller, I started looking into a “special needs stroller.” I remember discussing this with another mom in the physical therapy waiting room one day, and she asked why I didn’t just get him a wheelchair. I said I was worried about being judged for having a child in a wheelchair that could walk. In my head I thought, he’ll be judged for using a chair; people will see him as “less than.” And though I didn’t say it that day, if I’m being completely honest with myself, I didn’t want to see my child as “disabled enough” for a wheelchair. A special stroller seemed less … serious somehow?

But her words stuck with me, and I broached the subject to Julian’s physical therapist during the Marfan Walk, as Mark pushed Julian in one stroller and I pushed our daughter in another. His physical therapist agreed, and about 15 months (and so much insurance headache) later Julian had his wheelchair.

Julian with his wheels and his older brother Miles on a walk.

I’d thought of the chair as holding Julian back until the first time I saw him maneuver at the wheelchair clinic. It was then I realized that the chair is what’s allowing him to move forward (no pun intended). In a stroller, I always had to be there, pushing Julian along. With the new wheelchair and his Smart Drive, Julian can get around all on his own. With the chair, he doesn’t have pain stopping him from participating in activities. His peers are very understanding of the wheelchair, too (and often, over-eager to push him). The chair makes him free.

Julian doesn’t see using a wheelchair as a “second best” life. Recently when someone at church suggested that he’d be able to walk in Heaven someday, when his body is made perfect, Julian was hurt because his body is perfect now, just the way it is.

As parents, it’s painful to watch our children go through hard things, and I can appreciate that able-bodied people may have a hard time understanding that disability isn’t inherently bad. But when you see a meme like this, consider what it’s actually saying about disability before you share it. Remember: your kids are watching and listening to you, and the way you talk about their bodies will to set the tone for how they see themselves. Don’t let them think you believe their bodies are anything less than perfect.

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Maya Brown-Zimmerman is a stay-at-home mom to four kids with a variety of diagnoses including autism, Marfan syndrome, and a brain injury. She has a masters degree in Public Health and is the patient adviser to The Marfan Foundation's Professional Advisory Board. In her spare time she's going back to school, is a medical drama TV junkie, and enjoys reading and cooking. Maya blogs at Musings of a Marfan Mom. 

Simon on the first day of school this year.

Like all moms, I think my kid is pretty special. My son Simon has an amazing sense of humor and can find joy in every day. He draws hundreds of hearts on post-its and leaves them all around the house for his family and friends to find so we remember that he loves us. He’s great at Mario Kart, and he loves to go swimming. Simon also has Cerebral Palsy, Epilepsy, Hydrocephalus, Autism, and a unique genetic disorder. He has physical and intellectual disabilities. 

For 13 years as Simon’s mom and advocate, I’ve used the term “special” a lot. Unfortunately, I’ve used it less often to describe my awesome kid and more often to try to get him the things he needs just to be able to do the same things as other kids, like going to school and the park.  

Special education for learning.
Special needs equipment for getting around.
Special needs activities for being included.

Even though I use the term “special” so frequently to describe things Simon needs, the truth is that NONE of these things are actually special – they are necessary. Everyone needs to learn, get around, and be included. What is special is that people with disabilities and those who love them have to ask, and advocate, and plead, and push for every little ordinary thing. Even things as basic as public restrooms.

Many children with disabilities like my son need access to changing tables long past the point baby changing tables can support their weight, and there are no larger tables available. Putting a child on a bathroom floor is unsanitary and undignified. Changing an older child inside a vehicle is not private enough. As parents and caregivers we do everything we can to protect our children’s dignity and privacy; so when a change is needed families are often forced to go home. This limits our ability to go out and stay out in our community, and it limits our children’s opportunities to be included, have fun, and just be kids.    

Children with disabilities aren’t the only people impacted by this lack of restroom accessibility. Kids with disabilities grow up to be adults with disabilities who want to work and be a part of their communities. Through their service to our country, many veterans become disabled, and they deserve to come home to a community they can fully access. If we’re lucky, we will all age and with age comes disability. If we want to “age in place,” that place needs to accommodate our basic needs. Disability is a part of life.

Maryland State Senator Chris West (MD 42 -R) with Robert from Little Lobbyists chat outside the hearing room.

Using a public restroom isn’t a special need, it’s a necessity. This is why many states are now proposing bills that mandate adult changing equipment be included in the renovation or new construction of public buildings. Recently, I attended a hearing in Maryland for one such bill (SB 44) to support those testifying and to talk to my state legislators about why they should support this bill. My state senator Chris West (MD 42-R), who is a member of the Finance Committee where the bill was being introduced, even pointed out that many public places have already renovated bathrooms to include gender neutral/family areas which could easily accommodate adult changing tables. These tables fold flat against the wall and take no space when not in use.

None of us like talking about our need to use the restroom because, frankly, it’s uncomfortable and embarrassing. As a result, I was extra impressed with the bravery of those who showed up at the bill hearing to testify about their very personal needs. Not only did they show up, they waited quite some time for their turn to speak, despite the fact that – as one self advocate pointed out – there was no public restroom accessible to them in the Maryland Senate office building and many of them were in need of a change.

Here is some of what they had to say:   

“This Bill is an important step forward for people with disabilities to participate in employment and community access. … People with disabilities should be able to go out and enjoy the community without worrying if there will be a place where they can get clean.” - Ken Capone, Director of People On the Go of Maryland

“My disability does not prevent me from being in the community, but not being able to care for my personal hygiene does.” - Amanda, speaking on a panel with the Arc of Maryland

“I live my life everyday with no place for me to change, and that causes embarrassment for me. There ought to be a changing table here instead of telephones.” [in reference to the bank of obsolete landlines located in front of the restrooms near the hearing room] - Donna, speaking on a panel with the Maryland Developmental Disabilities Council

“I want to use the public restroom just like everyone else in my community. I am a registered and active voter.” - Robert, Little Lobbyists

Advocates from the Maryland Developmental Disabilities Council, the Arc of Maryland and Little Lobbyists waiting for their turn to testify in support of Maryland’s Senate bill 330.

Access for people with disabilities isn’t a special need; it’s a civil right. Here are some links to state bills supporting access to public restrooms (send us a message if we’re missing any so we can add to this list!). Please let your legislators know you support these bills and all civil rights for people with disabilities: A simple email or phone call can help us solve a simple problem with a big impact. And, if your state doesn’t yet have a bill for this? Suggest one (there are lots of examples below)! 

To find out how to contact your legislators (in any state), please visit: https://www.usa.gov/elected-officials 

Arizona (Already passed! Call to say thanks!): HB 2113
https://kjzz.org/content/929856/arizona-gov-ducey-signs-adult-changing-table-bill-law
And check out Dignified Changes, the advocacy group that got the Arizona bill passed and is working to expand this initiative.

California (Already passed! Call to say thanks!): AB 662
https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160AB662

Florida: SB 1106 / HB 669
https://www.floridatoday.com/story/news/newswire/2019/12/24/bill-seeks-require-adult-changing-tables-florida-public-restrooms/2740711001/

Georgia: SB 125
http://www.legis.ga.gov/Legislation/en-US/display/20192020/SB/125

Maryland: SB 44
http://mgaleg.maryland.gov/mgawebsite/Legislation/Details/SB0044?ys=2020RS

New Hampshire (Already passed! Call to say thanks!): HB 628
https://legiscan.com/NH/text/HB628/id/1851806

New York (Already passed! Call to say thanks!): A03940
https://www.governor.ny.gov/news/governor-cuomo-announces-passage-legislation-ensure-equal-access-diaper-changing-stations

Ohio: SB 249 / GA 133
https://radio.wosu.org/post/ohio-bill-would-require-more-adult-changing-tables-restrooms#stream/0

Oklahoma: “Max’s Law”
www.facebook.com/MickeyDollensOK/videos/3034829759892397/

Pennsylvania: HB 117
https://www.wesa.fm/post/advocates-say-adult-changing-table-bill-promises-dignity#stream/0

My name is Tasha Nelson and I want to talk to you about my amazing son Jack.

Jack is a spirited, funny and imaginative 8 year old. He has a passion for Marshmello, video games, extreme weather and the Titanic. He sings in our local children's choir, is on our neighborhood swim team, and enjoys being  a cub scout. He is a little boy who loves music and science. If you ask him what he wants to be when he grows up, hell tell you “a DJ like Marhsmello that is also a doctor who cures cancer”. 

My little DJ-Doctor Jack was born and lives with a disease called Cystic Fibrosis. While this is thought of primarily as a lung disease, the truth is it affects nearly every major organ and system of his body. At one month old, Jack received this diagnosis and the first of what would become one of many daily life saving medications. This medication allowed him to digest food, something he had failed to do every day since he was born. The price tag on that medication? I was responsible for $240 per month.

 At 3 months old, Jack required another medication vital to his life. His mucous had become so thick in his sinuses that it was the consistency of chewing gum, and he struggled to breathe. His doctor prescribed a new daily medication that would help him breathe. 

My baby was struggling to breathe, and we had a solution available but the doctor told me that we would need a prior authorization from our insurance in order to fill the prescription. I called my insurance to ask how long this would take and was told 7-10 days if approved. IF approved. My baby needed to breathe and I was being told it may or not be approved for 7-10 days. AND the price tag on that medication?  I was responsible for $1,200 per month. 

As Jack ages, his disease requires him to take more and more medicine. New innovations in research and development are resulting in some extraordinary medications that have an even more extraordinary price tag. The median cost of medications for a person living with Cystic Fibrosis in the United States is nearly half a million dollars a year. Depending on your insurance plan, the cost to your family can vary anywhere from several hundred dollars per month to thousands. This is for life-saving medication, and I don’t think my son’s life should have a price tag. 

Every single day families like mine sell our things online or in yard sales, or start go-fund-me campaigns in an attempt to afford the medications our babies need. We do everything we can to avoid medical bankruptcy. We do everything we can to get the medication that keeps our kids alive.

What do we need to fix this broken system and change it to promote the well being of our chronically ill, rare disease, and disabled populations? We need formularies to no longer exist. We need prior authorizations to no longer exist.  We need innovation, research and development of new medications to continue, but the cost cannot be bankrupting families that are doing everything they can to keep their babies alive. A medication is only life-saving in use if it is accessible to the patient. If I can’t afford it, Jack can’t benefit from it. 

Children like Jack need their government to stand up to pharmaceutical manufacturers, pharmacy benefit managers, and insurance companies and say NO MORE. NO MORE will pharmaceutical companies continue to prioritize bloated corporate profits over patient lives. My son Jack, and all of the children like him, deserve better.

[image description: Little Lobbyists mom and director of operations, Tasha Nelson, speaking at the podium of a press conference for affordable pharmaceuticals.]

These remarks were given on September 25, 2019 at a press conference on Affordable Pharmaceuticals with Speaker Nancy Pelosi.

My 14-year-old son Victor is a really social guy. He loves baseball, arts & crafts, the pool, and listens to any music that helps him get his groove on, especially the Beastie Boys, and Johnny Cash. 

Yet worry has engulfed me, I’m on edge and uncertain for Victor’s future because he also has complex medical needs and disabilities. A lot of things interrupt my sleep at night … these days, anything to do with how things shape up or slim down in American health care. Health care really stresses me out! 

Managing Victor’s medical care has been an obstacle course since 2005, when my husband and I began our journey with Victor. In and out of the hospital, we had to learn about and cope with Vic's daily seizures – at one point 50 or more per day. 

If that weren’t stressful enough, there were his medical bills. During those early years, at the bottom of every insurance “Explanation of Benefits” form, the number showing how close we were to Vic’s lifetime limit kept increasing (by age 3 he reached over $600,000). I’d point this out to my husband, who’d try to keep me calm. At that time we had a decent employer insurance plan, but I still had to fight regularly with our insurance company over denials. Back then, we had no private duty nursing, we paid thousands of dollars out of pocket each year, and I had to itemize EVERYTHING so we could claim our medical costs on our taxes to recoup something (By the way, the Republican’s 2018 Tax Bill will no longer allow medical deductions after 2019!).

Vic's care became more complicated over time. We routinely visited specialists searching for answers, I took Vic to multiple therapists, and I enrolled him in a birth to three early intervention program, which required my attendance. Victor's multiple medical procedures added up, including the feeding tubes he still needs today. 

When Victor was 4 years old the Affordable Care Act (ACA) passed. I cried tears of joy, the relief I felt was so real! The ACA meant that my son's life mattered: that his medical care would not be denied by insurance companies because he had multiple pre-existing conditions. The ACA told every disabled person that they mattered, too. States have had the option to expand Medicaid since the ACA passed, but it took awhile for them to fully grasp the importance of making that leap.  Today. many states with a high uninsured rate have begun to reap the benefits (like keeping hospitals open) of Medicaid expansion .  

Vic is now on a Medicaid waiver in our state of Texas. This waiver covers much of his care, including private duty nursing that most employer-based insurance does not cover. However, when Vic turns 20 he will age out, and in Texas - which still chooses to turn away from Medicaid expansion – Medicaid waivers for adults do not cover private duty nursing, thereby creating another layer of worry and uncertainty for Vic’s future. 

Even worse, Texas is suing the U.S. Government over the Affordable Care Act. If the state prevails in Texas v. U.S., the ACA will be declared unconstitutional everywhere. No health organization agrees with an ACA repeal, and neither Texas nor congressional Republicans have a replacement plan. Our health care protections will simply be gone.

I know the ACA is not perfect. Despite subsidies, insurance policies are expensive – in large part because President Trump has refused to defend or uphold the ACA, resulting in fewer sign-ups and forcing many companies to leave the exchanges and driving up costs for everyone. 

But the ACA is more than a group of health insurance policies. The ACA represents the ideal that every American should have health care coverage, regardless of pre-existing conditions or disability. The ACA put an end to lifetime caps, provides emergency care without pre-authorization, and expanded Medicaid – all of which are essential for families like mine! 

The truth is that, regardless of who takes office after the 2020 Presidential campaign, even in a best-case scenario it would take years to transition to a universal health care system. The issue we should all care about most TODAY is the lawsuit in court now; EVERY American's health care future is on the line! 

I feel the heavy weight of the Texas v. U.S. lawsuit. I know my son's life and our family’s financial future are on the line. Today, I will do my best to keep it together, to focus on what we have now, and to hope and to pray that the Texas lawsuit is thrown out of court, or ruled in favor of preservation of the ACA. Afterall, the Affordable Care Act is all any of us has to #ProtectOurCare!

Victor and his dad embrace during a recent hospital stay.