My five-year-old daughter Louisa wakes up eager to attend preschool every day. She loves singing and dancing, and enjoys playing with Play Doh, as well as listening to endless bedtime story books. Louisa was also born with a rare and severe heart condition – Hypoplastic Left Heart Syndrome (HLHS), in which the left side of the heart is critically underdeveloped and does not supply the body with enough oxygenated blood. HLHS was a devastating diagnosis, but thanks to improved outcomes due to progress in science and surgery, our dedicated medical team, and access to quality health insurance, we have hope.

Louisa recently started taking a medication to lower her elevated lung pressures, a generic drug called Sildenafil, best known by its brand name Viagra. Yes, Viagra, the erectile dysfunction drug currently on the market in an over-the-counter pill form for $20 per month. Sildenafil has become a standard of care for babies and children with pulmonary hypertension and vascular resistance. One physician told me recently that 40% of their patients with Louisa’s heart condition are benefiting from this medication.

Small children and babies cannot take Sildenafil in pill form; it must be titrated in small oral suspension doses, available only by prescription, often in dosages too exact to cut and crush pills at home. However, the out-of-pocket cost of Sildenafil oral suspension is 300-600 times more than the out-of-pocket cost of the pill. Our family recently faced a crisis when we dealt with a delay in approval. Our nonprofit hospital pharmacy quoted us a cash price of $12,000 per month, out-of-pocket.

Fortunately, our insurer’s nurse case manager and Louisa’s cardiology staff were able to expedite approval. However, the insurance-covered rate was a steep $6,227.42 per month. While things worked out for our family, it is deeply concerning to know our child is dependent on a medication we cannot begin to afford without quality insurance. Other families have not been as lucky – one family in our situation faced a six-week delay in getting this medicine approved, although their child’s heart health is declining. Another had to pay $6,000 for one month, out of pocket, in order to avoid delaying necessary treatment.

This past June, when the FDA approved Novitium Pharma’s generic oral suspension of Sildenafil, Novitium’s CEO Chad Gassert said via press release: “We are pleased to announce that the launch of Sildenafil for oral suspension has already initiated. Novitium remains dedicated to providing patients with a steady supply of affordable treatment options, and to progressing the availability of generics in niche therapeutic categories.”

How can a family afford to pay $6,000 to $12,000 per month to keep their baby with a heart condition alive? Louisa takes nine additional medications – why should this one generic medication cost so much? Why do men with erectile dysfunction get a bargain basement price for the same generic medication? The reason is simple. There are currently no regulations on the cost of medicine in our country, so for-profit pharmaceutical companies charge whatever they think they can get for medication. And it’s not just my daughter’s medication – common medicines which have been on the market for decades, like epipens and insulin, cost thousands. Pharmaceutical companies know families like mine will do whatever it takes to keep our loved ones alive. All of us pay for the inflated costs of medications; these are being passed right back to all of us in the form of higher premiums and copays..

This fall, the House of Representatives has been holding hearings on H.R. 3, The Elijah E. Cummings Lower Drug Costs Now Act of 2019, introduced in June 2019. H.R. 3 requires the Center for Medicare & Medicaid Services (CMS) to negotiate with pharma companies for certain extremely expensive prescription drugs – current law does not allow CMS to do so. The Congressional Budget Office (CBO) estimates that Medicare Part D patients would save up to 55% on prescription drugs in the first round of negotiations, and 40 to 50% in subsequent rounds. The negotiated price would be based on 120% of the average cost of the drug in other industrialized countries, or 85% of the average U.S. manufacturer price.

The Lower Drug Costs Now Act would also lower the price of prescription drugs under private insurance plans, provided the insurer offers the negotiated CMS rates.

It’s vital that we reduce the cost of prescription drugs in the U.S. – the lives of uncountable numbers of infants, children, and adults depend on it. The Lower Drug Costs Now Act (H.R. 3) will be brought to a vote this week in the House of Representatives: Please contact your representative now and urge them to vote yes on H.R. 3.

Louisa helping her family with yard work.

I had taken my daughter Penny to the Metropolitan Museum of Art in New York City. After a morning of Penny marveling at the masterpieces, we stopped for lunch in the cafeteria. Penny has a rare neurological disorder called Aicardi Syndrome. She uses a wheelchair, has a g-tube, has intellectual disabilities and an inability to speak. When kids see her, they tend to notice her. Reactions can vary widely.  

As a family walked by us, a young girl turned toward Penny. A moment later, the mom came over and asked if her daughter could introduce herself to Penny. "Sure! Penny loves meeting new people!" I answered. The girl introduced herself and asked if Penny could talk. I told her that Penny couldn’t, but loves being spoken to. The girl asked Penny what she saw in the museum, and I told her Penny loved the colorful windows in Medieval Art. "The windows are my favorite! Well, Penny, I have to go. Have a nice day!"  

That moment was the highlight of my month. Penny can’t initiate her own social interactions, and rarely has the pleasure of other children approaching her with genuine interest and joy. I don't know if the girl was taught the kind of empathy and curiosity that she demonstrated, or if she's just miraculous like that, but the world needs more people like her.

If you know a child with disabilities, there's a good chance that child has been ignored, mocked, and/or avoided by a lot of children, and even adults. Penny may not understand the fine details of many social interactions, but she knows when a friend arrives. You can see it on her face with her wide smile and her gleeful vocalizations.

The Americans with Disabilities Act (ADA) facilitates access to buildings, education, and fair legal treatment. But many children with disabilities lack access to loved ones, support networks, and a sense of belonging. We’ve been blessed to have a core group of friends and family who’ve decided that Penny will always be a part of their lives. But if you took this social access away, Penny would be devastated, just as she would be without the ADA.  

Penny needs people who see her as a loved one, but she doesn’t need those who see her as a project, a prop, or a character reference.  Here are a few truths I’ve learned about being a friend to Penny:

#1 If you have an end-date in mind (community service hours, etc.), you're in it for you, not for Penny. Occasionally, parents tell me that their child has to do a community service project and would like to visit Penny. My response is: If your child is interested in learning about and developing a relationship with Penny, ok. If your child is going to put in the necessary hours and then cut out, my daughter does not exist to help your kids reach their extracurricular requirements.  

#2 If you'll stop coming if you can't post about it on social media, you're not in it for Penny. You’d like to visit Penny? Great! But please ask me or my wife before posting photos. I've experienced too many instances of people taking selfies with Penny and posting them all over social media. Penny is not your “Disabled Best Friend,” and she’s not a chapter in your Facebook Story. And she is certainly not a way to demonstrate to your friends and family how wonderful you are for developing a relationship with this girl in a wheelchair.

#3 If you can't think of one reason why you're looking forward to your time with Penny, you're not there for her. Recently, a child at a nearby school did a project on disability rights and cited her friendship with Penny, using Penny's name. Aside from the fact that we were not consulted before our daughter was used for this, Penny has virtually no relationship with this girl. Please don’t exploit a non-existent relationship with a disabled child for a school project. It should go without saying it’s a pretty horrible thing to do.

#4 If, however, you keep thinking about her, your child keeps asking about her, and all you think about while driving to see her is that laugh she makes when Peppa Pig is on, then Penny is waiting for you.



Currently, Texas Governor Greg Abbott and Attorney General Ken Paxton are fighting to overturn the ACA. Governor Abbott, a pro-life politician, has said, “Texas has become the national leader in defending life. As governor, I will fight for every child to have a chance at life." But as I sit with my son Raphael, who has complex medical needs, I wonder—how is Texas defending life when it attempts to pull the ACA and Medicaid protections away from my son and many others like him?

I remember my pregnancy with Raphael: At five months pregnant, my husband and I are staring at a whiteboard. A world-class doctor has just finished writing our baby’s health issues on the board. He tells us it’s time to make a tough choice, and that if I were his daughter, he wouldn’t let my baby be born. We disagree—this baby is loved more than anything. We had tried for years to get pregnant, and had dreamed of the love we would show our baby. I dreamed of baby snuggles and laughs, and watching our child grow.

Fast forward eight months. My son, Raphael, has survived three months in the NICU, two surgeries, and countless medical procedures. We adjusted to life in the NICU, and I learned how to take care of my son’s medical needs. Every month on his “monthday” we would throw little NICU parties, complete with party hats and banners. Each night, we’d read him books and cuddle him to sleep. I learned infant massage and used oil to massage his tiny body.

We’d been home for a week when I woke up to see him lying limp and cold. In the scariest moments of my life, I performed CPR. Now I was at a different children’s hospital, in a trauma room, watching swarms of medical professionals surround my Raphael’s tiny, lifeless body as they worked to bring him back. The doctor told the team to work faster, that “this baby isn’t responding.” My heart nearly stopped—all I wanted was my son, alive.

For weeks after that horrible day, we sat by our son’s bedside, watching him slowly improve and stabilize. At this point, our medical bills (despite my excellent private health care plan) were skyrocketing—we received our first bill, for thousands of dollars, and panicked—how would we pay this on top of the hundreds of dollars we had been paying for weeks to park at the hospital?  When you are inpatient, everything is more expensive: food, gas to get to the hospital each day, and all of the specialists. Because my pregnancy had been so complicated, we had already spent all of our flexible spending account funds.

At some point in those hazy hospital days, a social worker helped us walk through the paperwork so our son would qualify for a Medicaid waiver—state-federal secondary insurance coverage expanded in our state as a result of the ACA to protect more little Texans with complex medical needs. Without the ACA and Medicaid, my son’s life and our livelihood would be at risk. Raphael needs monthly shipments of medical supplies and multiple therapy visits per week, which are covered by Medicaid. He gets sick easily, and when he does, he tends to get REALLY sick. Those additional health costs are covered. Medicaid provides home nursing that keeps Raphael healthy and allows my husband and I to work at jobs that matter to us and provide for our family.  

Raphael is now three. He loves playing soccer, going to swim class, and convincing his dad and me to take him to Chuck E. Cheese. He is supremely inquisitive (he’s teaching himself Spanish!) and incredibly loving; he adores his little sister and loves to shop with his shopping cart. Without Medicaid, Raphael would not be the thriving toddler he is today.

Both the ACA and Medicaid protect Raphael’s right to health care. Due to his complex medical needs, Raphael would not qualify for health insurance without the ACA’s guaranteed coverage of pre-existing conditions. Without the ACA and Medicaid, Raphael would have maxed out his lifetime health care cap long before his third birthday.

So, I sit with Raphael and wonder – how will he, and so many children like him, continue to survive and thrive if Governor Abbott and Attorney General Paxton succeed in taking away his health care rights? 

[image description: Mom Gillian with Raphael and his baby sister and dad seated together in front of a window]

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.

I wish I were a battery, so I could plug in and recharge. I posted this on Facebook today, and a kind friend responded, as one does, that humans recharge by unplugging. I said I didn't know about that.

I do wish I could recharge by being plugged in. That would be so much easier than plowing through all the hanging fronds and threads of suggestions about self-care. None of the social service agencies with which we're connected allow parents any time for self-care. It's anathema to the entire system of caregiving. Self-care is, indeed, a pleasant fiction that others indulge in for my sake.

Walks, runs, massages, mani-pedis, dinners out alone, time with friends. Those occasions arise, yes, but I've gotten to the point after 20 years of this at which self-care seems a distant reach.

To be honest, for me, self-care is ignoring things (paperwork mostly) that I just don't feel like doing today or any particular day. So I let my mail pile up, open it and let some of the stuff pile up elsewhere, shuffle it into different piles, continue to pick out the items that seem the most important or urgent or both, and letting the rest of it sit. Every 3 or 4 months, I take a day and go through all of it at once.

Tomorrow, I'm driving my daughter back to college in Vermont. Today I grabbed a box and stuffed all of that paper into the box, all the clutter in piles all over my home office. It's satisfying to see it all in one cube.

I've had a lovely summer being a parent one last time to two children: Rob and Edith. Edith has just finished her freshman year at Middlebury, and she definitely needed some additional oversight coming home on a couple of different fronts. The household was full again. We were one smoothly oiled machine--walking the dog, taking care of the cats, dishwasher dirty & clean, garbage out, boxes cut up, groceries, dinners made. Oh, yes, and I taught her to drive this summer--all 60 of the required hours. She takes her driver's test tomorrow on our way to Vermont. That's a long story and not that interesting.

She's going to take an internship, she says, next summer. As I told Rob tonight at dinner when he seemed glum, now is the time for each of us must separate to grow. We can receive emotional sustenance from each other, but, eventually, we grow by coming apart. We'll always convene again as
a family, we'll always spend time together.

Yesterday I sent an essay into a call for submissions, an essay I've been working on in fragmented time all summer. I hope it's good enough. Today, I submitted another essay in which I have more confidence. I need to submit work a whole lot more to make any progress. I need to write more and complete long-term projects.

Rob needs to take his college "challenge" courses at Montgomery College. He needs to go to Spirit Club, his disability gym. Rob needs to write more poetry and perform it at some local reading series. And, most importantly, he needs to continue to advocate for health care and disability rights.

And that's where I've found my greatest respite and self-care: advocacy. Last December, as he was transitioning from high school, Rob identified advocacy as one of his transition dreams. So I signed him up for Little Lobbyists and for the Rare Action Network. We've plugged into a number of other advocacy groups as well, looking for our home.

When I'm advocating for health care, for disability rights, for funding for rare disease, I feel alive. I never thought advocacy would be for me until I had to jump into it to assist Rob and his own dreams. Its community. It's reassurance. It's projecting the better parts of me outward in service of others. This selflessness feels better to me than any of the other "selflessness" in which I've engaged as a caregiver.

Abnegating my "self" simply as a mother, on a routine basis has a draining effect on me. In the WDC area, when people talk about being "plugged in," they mean they know a lot of people, that they're influencers. This self-identification as plugged in can seem selfish, a form of bragging, a way of fulfilling personal goals by using other people.

But the advocacy I've found in these last seven months has been a group effort with no thought of personal reward. It's all moms and dads, all parents of children who need us to stay at home, to stay healthy, to thrive. No other "self-care" has been as electrifying to me as this: being plugged in. Like a battery, I'm recharged.

Reposted with permission of the author, Jeneva Burroughs Stone, from her personal blog “Once Upon a Caregiver.” Jeneva is the leader of the Little Lobbyists 16+ community for older teen and adult Little Lobbyists and their families.

Jeneva with her son Robert and husband Roger advocating for Medicaid in front of the Capitol with members of Congress and Little Lobbyists mom Laura.

Jeneva and her family with the Little Lobbyists at a Town Hall with Senator Elizabeth Warren.

Photo of a smiling little boy standing in front of greenery holding a handmade “Class of 2032” sign.

I never thought I’d get to write this to you, and so I’m not sure quite what to say. You start kindergarten tomorrow, your first day of school, and in a life filled with so many firsts we never expected, this one looms large. It feels significant, heavier, somehow, than things that should logically carry far more weight. First laugh. First words. First open heart surgery. First time on bypass. First frantic run through hospital hallways to make sure you hadn’t suffered a massive stroke. All of that, and this is the one that’s bringing me to my knees.

First day of kindergarten.

Since the day we found out that your heart had formed so uniquely, that your organs were scattered like leaves in the wind, I steeled myself against the worst. I knew I’d see you covered in bandages, tethered to machines that would keep you alive when your tiny body wasn’t strong enough on its own, and so I rearranged the furniture in my dreams to fit into a much smaller space. Instead of college, I quietly, carefully let myself hope that you’d take a step one day. Instead of a driver’s license, I let myself look ahead as far as your first birthday, maybe. I couldn’t bring myself to take the tags off your pajamas until you’d actually grown into them, so there’s no way I was planning your outfit for the first day of school.

That outfit, the monster shoes and the dinosaur backpack with the extra t-rex patch and the shirt that proudly proclaims that you are writing your own story? It’s laid out carefully, waiting for tomorrow, and I’m sitting here wondering how you’ve come so far, wondering how I can possibly fit everything I want you to know into this black and white when my own heart is bursting with a thousand colors.

You are strong. Your heart has seen the light of day four times now, stopped twice for hours on end and started up again to power you farther and faster than we ever believed possible. Remember after your last surgery, when you realized you could run without getting tired and you took off down the boardwalk, arms outstretched, screaming that you were Superman? That’s the strength I want you to carry with you while you head into that school tomorrow.

You are kind. This, more than anything, is the measure of the man I’m starting to let myself hope you’ll be one day. You know what it means to hurt, so make sure you keep your eyes open for kids around you who might be hurting. You know how it feels to need someone to speak up for you, so now it’s your turn to use your voice to speak up for the vulnerable.

You are brave. I don’t mean you’re never scared; that’s not real brave. You’re the kind of brave that’s faced the darkest fears and held tight to my hand while you stared them down. You’ll have to let go of my hand tomorrow, but just remember that you know how to look fear in the eye and come out the other side. You’ve done it before. You can do it again.

I’ll be waiting for you at the end of the day, at the end of every single day from now until forever.

Happy first day of kindergarten, Ethan. You’re my favorite reason to hope.

Love,
Mama

Reposted with permission of the author, Ali Chandra, from Hope for Ethan

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.

Reports by the New York Times, Huffington Post and Yahoo News, among a myriad of additional media outlets regarding the treatment and conditions in detention centers all over the southern border are chilling and infuriating. We’re learning  that U.S. Border Patrol agents are confiscating children’s medication. They are being kept in unsafe and unsanitary conditions, exposed to temperature extremes, without access to hygiene items we all take for granted and are even being kept from hand washing, despite cold and flu outbreaks. For those of us in the Little Lobbyists community, the reports are terrifying. Our children have complex medical conditions and disabilities, and while the U.S. health care system offers daily threats to our children’s lives, we have the ability to stay home and fight back.

None of us in the U.S. should remain complacent about the privilege citizenship offers us. Like the migrants seeking asylum at our southern border, any of us might have to flee our homes and seek shelter and good will elsewhere. Over the last several years, thousands of U.S. citizens, including the families of children with complex medical needs, have had to flee natural disasters, seeking safe harbor in other states. Little Lobbyists has been one of many organizations sending crucial medical supplies to charities distributing these essential items to U.S. citizens who have had to leave such first world luxuries behind. Children’s lives hung in the balance.

My own son is 22; on 9/11, Robert was only 4 years old, a Buzz Lightyear fan enrolled in preschool. Our family lives in Bethesda, Maryland, and we were face to face with fear that day: Should we stay put and hope for the best, or should we join the gridlock on major highways to flee the area? We chose to stay because packing Robert’s medical equipment (including machines that require electricity), his multiple medications (some of which require refrigeration), and his other personal supplies (most ordered from medical specialty vendors), seemed overwhelming. 

Had Robert needed only one or two prescription drugs, however, I think we would have fled. That’s the reality for current migrant families facing political turmoil and immediate danger. Equally stark were decisions made by U.S. citizens fleeing recent hurricanes Harvey, Katrina, and Maria; many remain displaced to the current day.

On 9/11, my family put our faith in a belief the world would return to normal. But no one in the DC metro area really knew what might happen next. Were we lucky? Or were we trapped within a first-world fantasy of citizenship? Given current U.S. policy, if my family had to flee a disaster today, could we expect any better than to have Robert separated from us, stripped of his medications and medical devices? Would other nations treat us any better than we’re treating their citizens now? Robert would die within 72 hours, too late for any humanitarian agency to intervene. 

The events of 9/11 left me terrified. After the F-16s stopped rattling the windows of our home, after the Jersey barriers went up in front of congressional office buildings, after Robert returned to school, I grabbed a cheap green backpack and methodically packed every essential item Rob would need to spend five days on the road to some place safe. Every September for almost a decade, I replaced the pills and solvents and tubes and syringes to ensure the backpack would be ready to go at a moment’s notice. That green backpack had a special place in Rob’s closet. We all knew where to find it.

How can our government confiscate the backpacks of children like my son? Backpacks hurriedly filled by anxious parents fleeing political violence? How can border patrol agents refuse medication to children with epilepsy, asthma, diabetes, and many other diseases? Why is the treatment of medically complex children at our border even controversial?

The situation at our border merely reflects the broader systemic cruelty of our domestic health care. If Robert and I had to flee Maryland today, even to Delaware or West Virginia, what Robert needs to survive and thrive might not be available to us, simply because Medicaid rules and covered items are not the same, state to state. Even Medicaid as a form of insurance is not transferable from one state to another. Our zipcodes have become borders and barriers to treatment for our most vulnerable citizens.

In fact, any U.S. citizen who takes a prescription medication is vulnerable in the event of an emergency that requires crossing state lines, let alone international borders. Some private insurers are local, some are national, and state and federal regulations for prescription drugs are complex. 

It’s said we are a nation of immigrants. Each of us needs to keep that in mind, and push our elected representatives to ensure basic human decency at our borders, the basic human right for refugees to carry essential medication to continue treatment. We would want the same human courtesy extended to us should any of us have to flee the comfort of our homes. 

As the mother of a medically complex young man, I dare to hope that the U.S. can do more for all medical immigrants, both within its own borders and at its international boundaries.

Photo provided by U.S. Customs and Border Protection of children at the Central Processing Center on June 17, 2018 in McAllen, Texas.

The Author’s son, Robert.

The spring of 2010, when the Affordable Care Act was signed into law, was preceded by a hard winter for my family. In February, two major snowstorms hit the DC area where we lived within one week, dropping thirty to fifty inches of snow. They called it Snowpocalypse. During the height of the second storm, I slipped out a bedroom window onto our long porch roof, afraid it might collapse from the weight and knowing we couldn’t afford to repair it.

This was the accessible home we’d built for our son Robert, a medically complex child disabled due to an undiagnosed disease. We’d been chasing a diagnosis and treatments for him for 12 years. I bit the shovel in deep and pushed the heavy snow forward, watching it cascade into piles on the front lawn. Snow clung to my eyelashes, my vision spotted with haloes from the street lights. As fast as I shoveled if off, it accumulated.

Struggling with health insurance in the days before the ACA had been much like shoveling my way through an unending financial storm. My family had had 6 different health insurers in those dozen years, always one step ahead of bankruptcy by medical expense, whether due to annual caps, lifetime caps, or the tens of thousands of dollars we’d spent on co-pays, medications, uncovered items, and other out-of-pocket expenses. I’d taken a job I didn’t really want as an editor for a federal advisory committee, just so we could have the golden ticket: federal health insurance.

But I wanted more: The ability to live how I wanted to live. The freedom to do what was best for my family. That meant choosing where we wanted to live, pursuing work for the love of the job, not the health insurance tied to it, and knowing my son could be insured even if a good work opportunity didn’t offer health benefits.

During the 2008 campaign, Obama had promised to deal with our country’s health insurance crisis, yet during the summer of 2009, his opposition had gotten the upper hand: health insurance reform meant no one would be able to choose their doctor and the federal government would establish death panels. I’d watched a town hall meeting at which a senator from Oklahoma heard a sobbing woman describe her brain-injured husband’s eviction from a nursing home when his benefits expired. He had a feeding tube, and she was now expected to retrain him to drink and eat on her own. The senator replied, What’s really missing here is the failure of neighbors to help others who need our help. The audience burst into resounding applause.

Self-reliance, rather than government hand-outs, was the yardstick of freedom that audience understood. I’d learned self-reliance growing up in 1970s Vermont, when the state was still staunchly conservative. That mentality from my youth had me futilely shoveling snow off my roof in the middle of the night, without considering how easily I might fall off. We were always in danger of falling off and losing everything.

Our neighbors had helped us as they could, but I relying on them would be just another form of dependence. None of them had the money or expertise it took to pay for my son’s healthcare or assist with his home medical needs.

Robert’s illness taught me that self-reliance and freedom were not the same thing. If you’re free you can go anywhere and do anything, right? But you’d better not have anyone depending on you. Janis Joplin sang, “Freedom’s just another word for nothing left to lose,” yet in my life, I’d had everything to protect and keep. She and Bobby McGee were drifters, criss-crossing the U.S. That’s not the type of citizenship most of us experience, even if we admire its free-wheeling nature.

Freedom and self-reliance are a delicate balance. There are few opportunities without a solid base of support: some self-reliance, some neighborly, and, yes, some from the government. It is our government; it is we the people who form it. Our government can provide a platform for each of us to seek freedom. Let me put it this way: If I had certainty with healthcare, then I could take other chances. Then we could chase a better way of life—the American dream.

That spring of 2010, the ACA proceeded to a final vote, and Speaker Pelosi struggled to keep her caucus in line. Bart Stupak of Michigan was the final hold-out. In his floor speech, Stupak said that he wanted women to know that if they had a child and that child had medical problems, he or she would be entitled to medical care. I cried. Stupak understood what my family had gone through, all that long winter. Freeing my child meant freeing me and my family.

The ACA remains under attack today, snowflake after snowflake piling up and threatening to keep all of us in a permanent winter. Let’s not allow the critics to snow us in. Let’s move forward, once again, to a new spring of improved healthcare-for-all, so we can each manage our competing responsibilities and free-wheeling dreams.

“The greatest tragedy that can befall a child with Autism is to be surrounded by adults   
who think it’s a tragedy”. ~ Ellen Notbohm

Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards, a broader perspective of the world, and an unspoken fellowship with other parents who can understand and connect with one another from across the aisles of Walmart – and hopefully across the aisles of political parties, as well.

This life can also be overwhelming. It can be easy to get tunnel vision when you’re far into IEP preparation, therapies, and appointments; alongside the day-to-day challenges of life for our kids with Autism. This parenting gig (a different job than most!) requires a lot of focus: focus on today, tomorrow, this year, maybe even five years from now. Navigating the uncertain terrain is intense, scary, and isolating. It’s exhausting.  

Parents of Autistic children often travel a modified timeline for developmental milestones. We try not to compare our children with the kids of friends and neighbors, but I know from experience it can be hard not to filter the comparative ease of “neurotypical” experiences through an alternative lens of emotion and insecurity, self doubt and exclusion.

We’re told we need to learn to be flexible in our expectations. We talk about our need to adjust our dreams for our kids according to their diagnosis.

Knowing this, why would anyone be surprised to learn that some Autistic adults have feelings of resentment toward parents? That there’s anger, sadness, disappointment, suspicion, and distrust? If you think about it, it makes sense – for decades we work on care plans meant to “fix our kids” and help (force) them to fit into a world that my own autistic son, Sam, tells me feels “sharp and jagged” to him sometimes.

It would be easy for our kids to get the feeling that we think they are broken.

It should be easy to see that our alternative lenses don’t always show us an accurate picture of “best practices” for our children’s therapies, education, and more. That after years of traumatic events for our families, our perception as parents and protectors might be somewhat skewed.

For example, I was truly surprised to learn some adults in the Autism community want to be referred to as Autistic. I still struggle with this – as a mom, my gut feeling is that I want more for my child than this “label,” which feels like a limitation to me. I wonder why I can’t say artistic or athletic instead? Because my son is both of those things, too.

But maybe it’s the viewpoint of neurotypical parents (like me) - who’ve seen Autistic as something lesser in comparison to traits like artistic or athletic - that’s contributed to an impasse between the worlds of parenting someone with Autism and being someone with Autism. We lack the insight needed to accurately understand the full Autistic experience.

I first learned about the negative feelings some Autistic adult advocates have towards parent advocates when I joined Little Lobbyists, who’ve been advocating alongside self-advocates since they began. Little Lobbyists know our kids with disabilities will grow up to be adults with disabilities. We want to empower them to be the next generation of self-advocates, and to do that we know they need role models who are themselves disabled.

When you get a tip for who to bet on in a horse race, it’s most valuable (and accurate) when it comes directly from the “horse’s mouth”- the jockey or the trainer. Moving forward, I’ve decided to take advice straight from the most reliable source.

Only an Autistic person can be an Autism expert. I can trust that.  

“You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.” – Julia Bascom, Executive Director of the Autistic Self Advocacy Network

The author, Daya, with her son Sam.

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

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

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

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

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

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

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

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

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

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

The author Jeneva and her son, Robert. 

The following is the transcript from remarks given on 4/24/2019 at the Stop The Shock Washington D.C. Wait-in hosted by The Autistic Self Advocacy Network.

Laura giving her speech at the Stop the Shock wait-in.

Hello, my name is Laura Hatcher. My son, Simon, and the rest of our family are members of Little Lobbyists. We support Simon in his self-advocacy as a person with disabilities and complex medical needs, and we advocate together to create the kind of future all our families deserve - a future that does not include electrical shock for people with disabilities.

I’m also a college professor and creative consultant and I mostly work from a home office. Sometimes it gets a bit too quiet, so I put the TV on for background noise while I work. One morning fairly recently I caught a bit of a talk show – it’s called “The Doctors” – and I was surprised to hear one of their topics for discussion was the electric shock “therapy” of people with disabilities in use at the Judge Rotenberg Center.

We don’t often hear issues of disability rights in mainstream media so I was pretty interested to see how this discussion would go. As the host introduced the segment and the camera panned the audience I was glad to see the co-hosts and audience members were genuinely surprised and appalled to learn that this barbaric abuse is happening here, in the United States, in 2019.

Then, following the formula of shows like this -- they went on to question the so-called “experts” to learn more.

First, they asked a psychiatrist from a well known university about the practice, who firmly denounced it as torture and pointed out that there are myriad other far better treatment options available to individuals with disabilities and their families.

Next, predictably, they asked a representative from the Judge Rotenberg Center why - if the first specialist was correct -- the JRC persisted in its use of electric shock devices.

The JRC Clinical Director summarily dismissed the United Nations report stating that the use of Gradual Electronic Decelorators (GEDs) is torture. He claimed, that despite evidence to the contrary, they no longer really hurt people. He even claimed that they’d had some success with really tough cases, for problems nowhere else could deal with. As he spoke, I noticed that the way he talked about the people he was supposed to be caring for was dehumanizing. To him, they were cases not community members. They were big, scary problems -- not real, vulnerable people.

The co-hosts and audience members listened to this exchange with furrowed brows. They acknowledged that this was indeed a difficult problem. And then they cut to commercial.

I hoped that, when the show resumed, they’d have included a person with disabilities on their panel to respond. To provide a much needed first hand account of the damage abuse masked as discipline or, more insidiously, therapy, has. To explain that it does not heal anything or anyone. Instead it causes fear, anxiety, and lasting trauma.

But that didn’t happen. Instead they started on a new segment about mites living in eyelash extensions.

“The Doctors” never asked a person with Autism, like my 13 year old Little Lobbyists Simon, who has complex medical needs and physical and intellectual disabilities, what they really needed to understand. They never asked families like mine if the JRC clinical director was disconnected and dehumanizing in his assumptions about our loved ones.

If they had, they would have learned that just being secluded by an aide in school when Simon was in the first grade led to months of acute separation anxiety for him - communicated to us through sudden, painful meltdowns; and to years’ of guilt, fear, and an inability to trust outside caregivers for us, his parents who love him.

They might have learned that many families like mine are desperate, but not in the way described by the JRC clinical director. We are desperate to have the lives of our loved ones valued. To be counted as full members of our communities - the sort of people whose opinion would be worth getting when discussing their lives on a mainstream talk show.

No, they never asked. So we just have to tell them.

We need everyone -- even the talking heads, doctors, and so-called specialists – to recognize that people with disabilities are people and that “behaviors” are communication. We need them to be aware that there are insufficient resources to support people with disabilities in their homes and communities. We need everyone to understand that treating people to improve their health and well-being is NOT the same as shutting them away and shocking them into submission.  

We are here to remind the FDA that every day they delay banning the use of electric shock another person is subjected to treatment the United Nations has classified as torture. We are here to remind the United States of America that the imprisonment and torture of disabled people is wrong.

I sometimes think our government administrators have a lot in common with talk show hosts. They pan the audience for reactions but rarely ask for the input of true experts -- the people impacted. They observe commercial breaks and hope we will simply tune out.

But we cannot change the channel. I cannot bear the thought of a person like my son being tortured for simply being who they are by anyone too lazy, incompetent, or cruel to understand their needs. I know you can’t either.

People with disabilities are still being tortured today. Every moment we are waiting for the FDA to ban this practice is a moment too long. It is time to stop the shock.

To learn more, visit: www.autisticadvocacy.org/stoptheshock/

[Image description: An illustration of a construction site-style metal warning sign. At the top, white text on a red background reads: ATTENTION! Below that is large text which reads: “PEOPLE WITH DISABILITIES ARE STILL BEING TORTURED AT THE JRC.” Next to the text is a warning symbol depicting a person being electrocuted against a yellow triangle background. Below the warning symbol is text reading #StopTheShock. There is a post-it note on the sign that says #WeAreStillWaiting.]

Jessica Fox and her daughter Claire, age 4

I am a mom.

When my daughter was born with a heart condition requiring a high level of medical care, I became her advocate.

When I realized there were many kids like her, unable to access the resources they need to survive and thrive, I became a leader.

The truth is, I never thought I would be a health care expert meeting with legislators in our state Capitol, but now I am. Because I have to be.

Too often, our policies on health care are made by people who do not understand what it's like to care for a child who has had more doctor's appointments than play dates. That is why I started speaking up and fighting to change our state law.

I started speaking up because of my daughter, Claire, a very happy four-year-old child. She loves to tease her siblings and will pull out all the stops to make them laugh. She loves music and she loves to play dress up. She currently attends an inclusive pre-K program, where she signs her best friend’s name “poppy” by using sign language for “bubble".

In many ways, she’s just a kid living her best life; but unlike most kids, she has spent more than her fair share of time in hospitals, racking up millions of dollars of medical bills in the first two weeks of her life.

We were very fortunate to be covered by my employer’s commercial insurance plan to pay for her medical care. In addition, due to Claire’s extended hospitalization, we also qualified for our state’s Medicaid plan, called TennCare, as a secondary policy. This was necessary because as great as our insurance was, it did not cover everything Claire needed, like her therapies, medical equipment, and surgeries.

Then, one day, just prior to Claire’s 4th birthday, we lost her Medicaid because we no longer qualified. Just like that. I appealed not once, but twice and lost. How could a disabled child be denied access life-saving medical care in America?

I sat in the grocery store parking lot crying one day, and I knew I had to do something.

I have to confess that a year ago, I had no idea who my State Representative was. We all start somewhere. I began a letter writing campaign and asked everyone I knew to join me.

I connected with groups like Little Lobbyists, a family-led organization advocating for children with complex medical needs and disabilities, where I felt encouraged and a sense of community. I made calls to my State Senator. I reached out to several agencies. I attended health care forums. I took notes as candidates campaigned for the mid-term elections.  After tucking my kids in bed, I spent my late nights reading and learning about our state government. I learned about the Katie Beckett program, a Medicaid waiver program that allows medically complex children to live at home with their parents instead of an institution, by waiving the parent’s income. I learned that Tennessee was the only state in the country without this program.

I told my story in several newspaper and television interviews. This past October, my daughter’s face was the front-page center piece article of our local newspaper, talking about why we need the Katie Beckett program.  I joined four other families with children like mine, and we took off to our state Capitol. That day, my husband and I took our daughters to meet various lawmakers who agreed to sponsor a bill that we hope to become a Katie Beckett program in Tennessee.

I remember we sat in a legislator’s office, next to Claire as she rocked in his rocking chair. When you show up with your kid at the state Capitol, legislators are forced to see them with their own eyes. Claire is not a number or statistic; she’s a real child.

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Our bill is now progressing in Tennessee’s House of Representatives. This bill, if passed, will ensure Claire can access the medical care she and so many other kids need and for us, that means we give them every fighting chance to reach her their highest potential.

This is why we need to engage our lawmakers. They work for us. They need to understand how policies affect our lives. We are the experts on our children. We are the experts on policies that affect our children.

We are constituents. We are real people, who care about our loved ones. We are spouses and siblings and friends and neighbors, and yes, we are parents. It is time for us to speak up and lead.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

Jessica gave this talk on the Spark Stage at the Urig Summit in Nashville on March 30, 2019.

The realization hit hard, like a punch to the gut. Almost as hard as the day I learned my son has Cystic Fibrosis, an incurable fatal illness. I’m nearly 39 years old, have always considered myself an ally to marginalized communities, and have loved all people of all varieties all my life. I’m aware of racism, sexism, and ableism - discrimination against people with disabilities. But what I wasn’t aware of, until today, is that I myself have been an ableist.

Why am I calling myself an ableist? After all, I’m part of Little Lobbyists, a group of caregivers who advocate for kids with complex medical needs and disabilities, to ensure lawmakers understand our needs. Yes, I just said “our needs” and you’re probably wondering how I could be ableist? Good catch.

Recently, Little Lobbyists leadership were discussing how we define who Little Lobbyists advocates for. Within this definition, there was one sentence I was completely offended by. It read: “Kids with complex medical needs have disabilities.”

The degree of offense I felt was one of the greatest I’ve experienced. This one sentence and my reaction to it rocked my world. (I want to acknowledge here that I have benefitted from a very middle-class, white-privileged life. I realize, those reading this who have endured far more discrimination than I ever have, might be spitting out their coffee and laughing at my ignorance as they read this, and rightly so. I fully understand my experience is not remotely close to what so many others face every single day. For my part I continue to strive to do better.)

During the conversation that followed about this sentence I indicated that, though my son is medically complex, I in no way identified him as disabled. I could tell the other moms, who do identify their children as having disabilities, were surprised by this. We’re all Facebook friends, so they have a view into my son’s medical needs. I suspect much of what they see is similar to their own experience, and so they assumed we also identified as part of the disability community. We had a positive and open exchange about why I didn’t think my son was disabled, they listened to my opinion and didn’t push me to identify differently.

But since that day, I have found myself frequently revisiting that conversation and asking myself why don’t I identify my son as disabled? Is it because he has no cognitive disability? No visible physical disability? Because he doesn’t qualify for disability services under SSI? Could it be related to the first, and often repeated, thing the CF care team said to me when he was diagnosed – “your baby is a normal baby, who happens to have Cystic Fibrosis?” Is it because of the heavy stigma society puts on the word “disability?” Honestly, I think all of these things have played a role.

The ADA defines disability in this way: “ a person who has a physical or mental impairment that substantially limits one or more major life activity.”

My son Jack takes over 50 pills and 14 different medications per day. His respiratory therapy takes 2 or more hours every day. He spends a large portion of his life in the hospital. He’s not in school this week because he is not absorbing food, isn’t breathing as well as usual, and we have to implement new therapy techniques and train his school nurse to perform them.

Cystic Fibrosis (CF) is invisible, progressive, and deadly. Until his lung function drops below 80%, I consider him healthy in comparison to other people with CF. However I know full well that every single day, every organ in his body sustains more damage. His medications help slow the disease but cannot stop it. A simple cold could end his life.

Clearly Jack has a physical impairment that substantially limits one or more major life activities. My son is disabled. It is the first time in his nearly 8 years of life that I have said those words, accepted them, and fully understood what they mean. My son is disabled. Tears are dropping on my keyboard as I type this, tears from shame – not for my son, but for myself. For the first time I realize that I am an advocate for the medically complex and disabled community who could not see her own ableism.

Fortunately, Jack did not inherit my ableism. I suspect he self-identifies as a disabled person without realizing it. He is drawn to other children with disabilities and befriends them immediately. He says “mamma that kid is like me, we are gonna be best friends!”

My job now is to be like Jack and embrace this part of him. I need to acknowledge my shame, and work to change the stigma against disability that was so deeply ingrained in me that I could identify my son as medically complex but feel offended by the word “disabled.” It is up to me to shed the ableism society has instilled in me from youth. Doing so will make me a better person, parent, and advocate.

Being a member of Little Lobbyists has opened me to a world beyond Cystic Fibrosis. It has helped me focus on all forms of medical complexity and disability. Our advocacy isn’t about a specific disease, syndrome, or disability, because we really are stronger together. It’s about raising ALL of us up to create a voice loud enough to get Congress to pay attention to our children with complex medical needs and disabilities and consider them every single time they write a new policy or review a proposed law that impacts them.

Thank God for my friends in Little Lobbyists who did not judge me as I walked this path of discovery, but gently educated me while embracing me and encouraging my advocacy. I have a feeling I’m not alone, and am writing this in part as an invitation to other parents who may, like me, be in denial about their child’s disability. It’s time to take a good look at why we fear this word. Ending society’s stigma against our children with disabilities must start in our own hearts.

Little Lobbyist Jack in front of the U.S. Capitol.

I’ve been involved in healthcare advocacy work since I was 14 years old, eventually pursuing a Masters in Public Health. Most of my spare time is spent working with patients and families with chronic illness, but you can also find me binging home design and cooking shows on Netflix, and enjoying Brazilian food.

I was born with a rare genetic disorder called Marfan syndrome. I spent most of my first two years in the hospital having surgeries, but it would be several years later before my parents learned what the cause of my difficulties was. I have a list of specialists and medications. Without health insurance I could not afford the tests and pharmaceuticals needed to keep my heart as healthy as possible, let alone the periodic necessary surgeries (10, to date) and hospitalizations.

My husband and I are blessed to have 4 children, who are between the ages of 2 and 10. Between all the kids we’re involved in musical theater, cub scouts, and playing dress up. One of our children is autistic. One inherited my genetic disorder. One has a brain injury from in utero. I can’t work because of the time I spend in therapists’ and doctors’ offices with my children. Since the start of this year alone one of my children has had 2 ER visits and a multi-day hospitalization.

In 2013 my mother was about to start a new job when she started having dizziness. Less than week a later we learned she had stage 4 cancer as she was whisked to emergency brain surgery. I was with her when she woke up and the first thing she did was ask for a social worker to come and tell her whether she had healthcare coverage.

I don’t want to live in a country where someone’s first thought upon waking up from surgery is whether they’re going to go bankrupt from their care. I cried the day the ACA was passed because it meant a safety net for my family: no lifetime caps on medical coverage, and the guarantee of being able to get health insurance even if something were to happen to my husband’s job.

Unfortunately, not all members of Congress agree with me. Right now, I’m worried about the nomination of Chad Readler to the Sixth Circuit Court of Appeals. As a Justice Department official, Readler led the anti-ACA effort on behalf of the administration, and filed a legal brief arguing that the Affordable Care Act’s protections for people with preexisting conditions were unconstitutional. He wants to dismantle the ACA and a vote to confirm him is a vote against my family and millions of families like mine. I can’t let this happen. That is why I participated in a press call with Senator Brown yesterday and shared my story.

Right now, there are 11 million Ohioans. 4.8 million of us live with pre-existing conditions that range from diabetes and asthma to genetic disorders and cancer. Without the ACA, that’s 4.8 million of us here alone that may have to decide between going bankrupt from care, and going without care. If we reinstate the lifetime cap, what happens to people like my son and I, with complex medical conditions? I have friends whose children would have hit that cap by their first birthdays. What happens to the young adults trying to go to college or start a career that lose their health coverage under their parents?

If we lose these protections, people will die. It is as simple and horrific as that.

Whether or not my family loses these protections literally keeps me awake at night. I want our elected officials to remember that we cannot predict when we will need to access the healthcare system and so access to healthcare is an issue that is going to affect us all.  Congress needs to stop these attacks on people with pre-existing conditions and guarantee essential health benefits, lower the cost of care and prescription drugs, and strengthen Medicare and Medicaid.

Please join me in opposing Readler’s nomination by contacting your members of Congress and requesting them to do the same. Thank you.

The author, Maya, and her daughter.

It's the eleven year anniversary of my diabetes diagnosis and the government still wants me dead!

My brand of insulin costs $340 if I were to be uninsured. That's $0.34 a unit. A unit is ONE HUNDREDTH of a mL. If something seems wrong about that to you, that's because it is. (1)

Technological advances has increased to the point where human and analog insulin can be produced for under SEVEN DOLLARS a vial. For anyone following along at home, that's a nearly 5,000% increase in cost. (2)

It's estimated by the World Health Organization that the average diabetic will use 40 units of insulin a day. At the current price point, without decent health insurance, living a single day costs about $14. A week $95. A month $432. A year comes in at just under $5,000. (1)

There are no "generic" insulin brands on the market, no older options like "pork" or "beef," so to say, animal-based insulins, available in the United States any longer. This is due to "evergreening," a technique used by the big three insulin producers (Sanofi, Eli Lilly and Novo Nordisk) slightly tweaking the formulas for their insulin before their patents can expire, thus extending the patent. (3, 4)

That's why a drug that has been around since the 1920s is still so expensive. While, yes, progress has obviously been made, the Big 3 have slowed the process of change, with Sanofi filing a lawsuit against two producers, Merck and Mylan, from introducing a generic form of Sanofi's primary insulin. (4)

Now, you may be saying "if it costs so much, just suck it up and get health insurance. It's not the government's fault that you don't -" yeah, I’m gonna need you to stop. Because this is where the issue of Big Pharma and the American government's lax health care collide.

This past year, TWENTY STATES filed a lawsuit against the Affordable Care Act (which in March of 2010 made it so that insurance companies couldn't penalize those of us with preexisting conditions by refusing us health care) that moved to revoke the protections in place for us. Texas vs Azar went so far as to say that the protection placed on pre-existing conditions was "unconstitutional." I guess they missed the "life" part of that whole "life, liberty, and the pursuit of happiness" bit. (5)

Not only have legislators tried to take away something that keeps people with pre-existing conditions from, often, a painful, PREVENTABLE death, we've had to watch them mock us in the media. Mo Brooks (R-AL) decided that we simply weren't "living the right way." Or Mick Mulvaney (Officer of Budget and Management for the Trump Administration) declaring "that doesn’t mean that we want to take care of the person, or should be required to take care of the person, who sits home, drinks Coca-Cola, no offense, drinks sugary drinks, and doesn’t exercise, and eats poorly and gets diabetes." Which not only shows a fundamental lack of knowledge on diabetes, but a lack of empathy as well. (6, 7)

While the ACA has yet to be repealed, the window to apply for insurance through the ACA has been shortened from 90 days to 45 days and the awareness budget has been slashed by 90%. Now, there's also the option for Medicaid, which at base-country wide level, will offer coverage if you're under the 138% poverty mark- with individual states having the option to expand coverage to under that point.

I make under $9,000 a year and I only fall at the 73% poverty point, to help put things into perspective. And a basic plan at that rate, without Medicaid, runs on the national average (for me, a single household 21 year old nonsmoker) between $230 and $370 dollars. That's more than my rent if you were curious. (8)

All this to say, health insurance, even with aid, still isn't cheap. And when the cost of insulin is so high, there are still out of pocket charges you have to pay monthly. I know diabetics who have gone without insulin because they just can't afford it; they can't afford insulin; they're trying to save their parents' money. (9)

Diabetes affects over 30 million Americans, with 1.2 million having Type 1 specifically. There are, on average, 1.5 million new cases diagnosed each year. In 2017, the nationwide total cost of diagnosed diabetes came in at 327 BILLION dollars. It comes as no surprise that diabetes is the 7th leading cause of death in America. (10)

I'm 21 years old, and today, I've been diabetic for eleven years. The average life expectancy for a Type 1 diabetic is 15 years shorter than that of the average person. For a woman in the United States, the average is 81. (11)

That means for me, that average is 66. According to statistics, I've got 45 years left. And I'll be damned if the government takes a single year of it.

So do me a favor for my anniversary, keep health care in mind when you vote.

The author of this post, Jodi Aleshire

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SOURCES:

1- https://www.goodrx.com/…/how-much-does-insulin-cost-compar…/

2- https://beyondtype1.org/how-much-does-it-cost-to-produce-i…/

3- https://www.nejm.org/doi/full/10.1056/NEJMms1411398

4- https://health.usnews.com/…/whats-behind-the-rising-costs-o…

5- https://www.forbes.com/…/possible-removal-of-pre-existing…/…

6- https://insulinnation.com/…/trumps-omb-director-wasnt-alon…/

7-https://www.chicagotribune.com/…/ct-health-care-pre-existin…

8- https://www.kff.org/interactive/subsidy-calculator/

9- https://www.cnn.com/…/30/health/rising-drug-costs/index.html

10- http://www.diabetes.org/diabetes-basics/statistics/

https://jdrf.org.uk/…/about-…/complications/life-expectancy/

11- https://www.statista.com/…/life-expectancy-in-north-america/

Medical parents will know exactly where I’m going the second I say the following, “January is coming.” January is easily the hardest month for any medically complex family. In this month it does not matter if we have employer sponsored insurance, private insurance, Medicare or Medicaid—we all are all rendered equal in our work-load.

Why is January so hard for us? There is an annual avalanche of work created for us and our medical providers office by our insurers.

In my family of five there are two of us that are medically complex. I have a rare auto-immune disease called Behcet's as well as a rare blood clotting disorder. My 7-year-old son Jack has Cystic Fibrosis; a progressive and fatal disease that affects most of his major organs. To meet us, you would never know we fight illness. We both look and seem healthy.  By contrast, when you see our medical claims, you would think we were on death's door.

Every January I spend between ten and eighteen hours making calls to insurance companies, providers, pharmacies, and facilities. This work happens whether we have an insurance change or not. Where do we start? We first check our plan benefits and formulary (list of covered medications) to see if there have been any changes.  If our plan has changed pharmacy contracts, we must call and set ourselves up with our new local, mail order, and specialty pharmacy, then if there are formulary changes and insurance is dictating an alternate similar medication, I call the doctor's office to request a new prescription as well as all the other prescriptions be sent to the new pharmacies. While we are on the phone for that we are requesting new prior authorizations for all our expensive medications.

Most of our medications require a prior authorization so that insurance will cover them. Prior authorizations can take anywhere from 24 hours to ten days to complete depending on whether appeals are needed or not. If appeals are needed, then my work increases and I spend hours proving that my child’s medications are medically necessary. The irony of that is the person making the determination is rarely clinically licensed.

Next, we move to calling each of our medical  provider’s offices. Between my son and I, that is 11 different facilities I contact. Many families with medical complexities rely on grants and co-pay assistance programs which must be re-applied for annually and often provide new identifiers and cards. As soon as we are approved for those items, we make all the calls again.

Many of us incur a little extra work if we elected different insurance during Annual Enrollment, as I did this year. I filled our medications on 12/28/18 with my previous insurance and will fill them again with the new insurance on the first day it is effective 1/7/19. This is because we always need to have a 60-day supply on-hand in the event that we go through a lengthy appeals process, there is a natural disaster, or shipping is impacted. At all times, I must think ahead with every decision we make because without his medication, my son will die. I cannot hope to have enough.  It must be here, ready and on-hand.

This year my family’s insurance has changed, which means I’ll spend closer to 18 hours getting everything updated, ordered, approved, and shipped. The other thing I must be weary of is the dreaded gap. My old plan ends on 12/31/18, the new one begins 1/6/19. This creates a five-day gap where if a claim is submitted for medical care or medications I pay toward my deductible and out-of-pocket on the old plan which will not be attributed to the new plan. If we need medical care in those five days, we are increasing our annual out of pocket over the maximum.

January is full of research, phone calls, planning and care coordination. It is a complex mosaic that sets us up for relative success for the remainder of the plan year. On the other side, our medical providers are working just as hard to update our information and provide the items we need. If you happen to be a person that does not have the same January stress as the medically complex you may instead be a person that notices your doctor’s office running a little differently. The phone queue may be longer, you may have a longer wait for your appointment or a return call. Every piece of work we, as patients, are met with, the doctor's office meets in-kind.

My 7-year-old son Colton is in hospice.

Our entire family has been gathered around his bedside for weeks. His health, which had been slowly declining for over a year, rapidly deteriorated the day after Christmas. I’m grateful that he made it to Christmas, my smiling boy’s favorite time of year, to give us the gift of one last holiday together as a family.

The time will soon come when his broken body will be at rest, and my constant fight to ensure his access to health care will become a distant memory.

But not yet. Even in these final moments, when I should be able to focus the whole of my broken heart on saying goodbye, our fight is not over. Once again, our health care system has failed us. Once again, I am consumed by the fire of outrage at the suffering our children are needlessly forced to endure.

Obtaining hospice care for a medically complex child like my son is no easy task. The flat rate allocated for home hospice by Medicaid is not enough for a child like Colton; who needs a trach, feeding tube, supplemental oxygen, ventilator, medical supplies, medications, and more (we don’t call him our “million dollar kid” for nothing). Negotiating difficult contracts with agencies to set up care was complicated and stressful, to say the least.

As Colton became more ill, he needed more pain medication to remain comfortable. The prescription was written, but when we tried to fill it the medication was denied. Over the next few days, the script was denied four times. No matter what our physicians and pharmacists tried, it would not go through. As we ran out of medication, my greatest fear as a mother was coming true - my child would die a painful death and there was nothing I could do to help him. The health care system in our country is so broken that it prevented my child from accessing the medicine he needed to ease his suffering in his final moments.

I refused to accept this. I turned to the Little Lobbyists community I have been advocating alongside and my fellow mommas went into action. Through Twitter and Facebook, we shared Colton’s story. Generous friends and strangers donated funds and clicks alike. We cried out to the world for help and our voices were amplified by collective compassion and matching outrage. No family should have to endure this. Not here, not now, not ever

Fortunately we were heard by the people who needed to hear us. We finally got the attention of the pharmacy responsible. They explained they had made a mistake due to confusion over a new law in our state and were correcting the situation. After more than a week of worry, pain, and distraction, Colton finally got the medication he needed.

I’m filled with relief and gratitude that my beautiful little boy will not have to endure unnecessary suffering at the end of his life. But I cannot stop thinking about all the other mothers who are facing the death of their child. We should not have to fear the loss of health care coverage while we are trying to say goodbye. This is excruciating enough -- without fighting for hospice, without needing a “GoFundMe,” without exposing ourselves in our most vulnerable moment to the public scrutiny of social media in the hope that sharing our story will facilitate access to desperately needed care. This is wrong.

In his all-too-brief 7 years, Colton has taught me so many things about strength, and love, and the gift of life. To all who hear his story, I pray you learn just one thing from him – that the right to health care extends throughout a person’s life. My child deserves to live with dignity and as free from suffering as possible from the time he was a newborn in the NICU all the way to this moment in hospice, as he lies beside me struggling to hang on for just one more day.

Image description: Tonya (the author) and her son Colton embracing nose to nose.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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