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.

“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.

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

---

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.”

“Hello, my name is Sandra,” I recorded onto the senator’s voicemail as my own voice cracked. “I am calling you from my son’s Make-a-Wish trip at Disney World.” The tears started down my face. “I beg you to not repeal the Affordable Care Act.”

This was January 2017, just a week week before the inauguration of the 45th President of the United States. The timing felt ominous. We had watched the 2012 election returns from our son’s hospital bed, back when his tracheostomy tube had just been removed and a pacemaker was still protecting his heart. We knew that if our son were fortunate enough to leave the hospital alive, the outcome of the election would determine the fate of his potential for health insurance with a pre-existing condition and without lifetime limits.

Our son’s disease—a horrific and unpredictable autoimmune encephalitis that, like many other diseases, can strike anyone at any age and at any time—came on fast and furious. He went from perfectly healthy to critically ill within a week’s time. His first hospitalization was fifteen months long. The disease caused multiple acquired disabilities, the need for near round-the-clock nursing care, several medications, a wheelchair and other durable medical equipment. While his prognosis was uncertain, his spirit and grit were strong. The mere fact of our trip to Disney World felt like a miracle.

Make-a-Wish was incredibly responsive to his unique needs. Just weeks before our trip, my son stunned us when he regained his ability to walk with a gait trainer. I mentioned this exciting new development to the Make-a Wish staff member who coordinated our trip and she quickly rented a gait trainer for him to use at Disney. When she informed me that “It will be in your villa when you arrive,” I nearly dropped the phone. My son, the bulk of whose childhood has been spent in hospitals and at medical appointments, would be walking around the Magic Kingdom and, just like magic, the durable medical equipment needed to make that possible would appear!

It’s usually much harder. Even with relatively decent insurance, tenacious parents, and extraordinary medical providers, getting my son what he needs is a constant battle and soon after that Disney trip, the administration’s repeated attempts to repeal the Affordable Care Act and severely cut Medicaid made me fear for my son’s life. Should he need to change insurance for any of the predictable reasons, the likelihood that his coverage could be legally denied or prohibitively expensive has increased with each profit-motivated tactic to derail his protection. Given the necessity for mandatory enrollment of healthy folk to compensate for the coverage of folk like my son, coupled with the role of a robust Medicaid program to cover what private insurance does not for people with disabilities, the Republicans have been intent on discontinuing his current level of coverage and care. My son's ability to live at home, frankly to live at all, depends on the social contract between all of us.

Now the 2018 midterms are upon us and I fear for what lies ahead in health policies if the senators and congresspeople who voted against protecting my son’s healthcare remain in office. Already the administration has shortened the ACA enrollment period, allowed junk insurance policies to compete with more robust coverage, allowed non-protection of pre-existing conditions, launched a lawsuit to further undermine healthcare protections, failed to enforce current policies on which people with complex illness and disabilities rely, and misrepresented their healthcare policies and platforms while campaigning. Parents of children with medicalized lives know how to read the fine print of such policies and we know what puts our children’s lives at risk.

My mind returns to that moment at Disney, when I was taking time from my son’s Make-a-Wish trip to call the elected officials I had hoped would break with their party and protect my son. Now it is time to vote them out.

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Today’s election matters for family caregivers of children with medical complexity in unprecedented ways. At Little Lobbyists we have leveraged our collective power to protect our children in both our political processes as we also perform their day-to-day care. As November is National Family Caregiver Month, Little Lobbyists is partnering with the Who Lives Like This podcast to feature caregivers, just as we have featured our beautiful children over the past 100 days.

To kickoff off National Family Caregiver Month, Who Lives Like This features writer and caregiving comedienne Sandra Joy Stein. You can hear her episode on Who Lives Like This at http://bit.ly/NaFaCaMoPodcast.

Aiden with his Dad and Brother visiting the Capitol.

My name is Aidan Abbott, I’m 13 years old, live in Slinger, WI, love to play basketball and my favorite team is the Milwaukee Bucks. I also have a rare disease called Ectodermal Dysplasias.

People born with Ectodermal Dysplasias have severe oral and dental issues due to missing teeth. They also have sensitive skin, don’t sweat, and other health issues. I was blessed to be born with some of my teeth; however, others who have Ectodermal Dysplasias are born with only two teeth and some are born with no teeth.

Most families, like mine, have to fight for insurance coverage to cover our complex dental issues and insurance will constantly deny treatments. I think this is wrong. Kids need teeth to speak, eat, and chew, and it helps to have teeth so kids don't bully you.

Over the past few years, I have been going to Capitol Hill to advocate for medical insurance coverage for the repair of congenital anomalies, including dental treatments that are medically necessary. Each time I travel to Washington, D.C., I visit all of my legislators, and share my story. During one of my first visits to Capitol Hill, Senator Tammy Baldwin from Wisconsin not only listened to my story, she took action and worked on the Ensuring Lasting Smiles Act (ELSA). This legislation will ensure that medical insurance cover repairs and treatments of congenital anomalies for kids and adults like me. I even had the privilege of naming the Bill the Ensuring Lasting Smiles Act (ELSA).

Aiden and his family and Allison and her family with Senator Tammy Baldwin.

My friend Allison, who also has Ectodermal Dysplasias went to Capitol Hill with me and shared her story with her legislators. Ally was able to garner support from Iowa Senator Joni Ernst, who agreed to co-sponsor ELSA, when it was introduced by Wisconsin Senator Tammy Baldwin. The Ensuring Lasting Smiles Act was introduced in August 2018 and has bipartisan support in The House and The Senate.

It is important for kids and youth to share their stories and advocate on Capitol Hill. Legislators need to hear our stories and understand the struggles we go through and the insurance coverage issues our families face. If our legislators don't know about our insurance issues, they will not be able to help us.

I have made it my mission to work with Senator Baldwin's office and my other legislators to make sure that everyone born with congenital anomalies get the coverage and treatments they need. My family, along with the other National Foundation for Ectodermal Dysplasias families continue to contact their legislators and ask them to support our cause.

If we all raise our voices together, we can help bring change to kids and families who desperately need medically necessary care and treatments. If you’re over 18, make sure you vote for candidates who will protect our care in the upcoming midterm elections. And, no matter what age you are, you can start talking to your legislators at home and in D.C. about the issues your family faces.

I look forward to seeing you all on Capitol Hill in the future!

People have been asking us this since 2014 when our second daughter, Lorelei, was born with Down syndrome. Immediately after she was delivered, she was whisked away to our Children’s Hospital for surgery to repair a blocked intestine and she spent her first weeks of life in the NICU. In her first two years, Lorelei had more scary medical diagnoses, needed additional surgeries, hospital stays, and therapies. Though the bills were high ($120,000 for one stay!), we had good insurance and were covered. We were okay, so while I appreciated the many kind offers, I didn’t reach out for help.

In the spring of 2016 things were going pretty well for us, until I started to lose weight without trying and had several bouts of gastroenteritis. My doctor ordered an ultrasound, and in June of 2016 I was diagnosed with renal cancer.

My left kidney was removed, and though the recovery was rough, I was lucky that no chemo or radiation were necessary. Once again, kind offers of help poured in.

“If there is anything you need, please let us know.”

We had out of pocket expenses, but didn’t have to risk losing our home to pay for the surgery. I worried about leaving my children without a mother, but I got the life-saving medical care I needed. When I didn’t feel well, I could see the doctor and take necessary medication without worrying about the cost. We had good insurance and I could take care of myself; so while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2017 we discovered that Lorelei had life-threatening third degree heart block and needed a pacemaker. As Lorelei faced heart surgery and our family again faced a “new normal,” more kind offers of help poured in.  

“If there is anything you need, please let us know.”

But Lorelei survived, and thanks to our insurance we didn’t worry about the cost of heart surgery or the hospital stay, we focused on her. She was going to be okay. So while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2018, Lorelei developed a cough that would not subside. Her doctor sent us to the ER and she was admitted to the hospital and diagnosed with RSV. We celebrated her 4th birthday with nurses and doctors at her bedside. Fortunately, Lorelei recovered pretty quickly and we were able to go home in a few days. Until, two weeks later, she was back in the hospital with pneumonia. Again, our friends and family stood by us.

“If there is anything you need, please let us know.”

I no longer sleep well during cold and flu season (which in Ohio lasts from September to May), and this year I was diagnosed with a rare and incurable neurological disorder called Cervical Dystonia, which causes excruciating neck pain (and is exacerbated by stress). But, when Lorelei has a cough for more than a few days, she can go to the doctor. She can also see the other specialists, and get the therapy, hearing aids, and additional surgeries she needs. I can also get treatment for my pain and monitor my cancer, so I’m able to continue caring for my family and working full-time.

Woven in between all the frightening diagnoses and unexpected hospitalizations are moments of joy, fun, and laughter. We are blessed with an abundance of love and fortune. Lorelei and I have both been saved by medical science, wonderful doctors, and access to affordable and necessary health care coverage. We have bills, but for now, we can afford to pay them. We have been able to focus on our family and haven’t needed to ask for help.

Until now. The Affordable Care Act, which protects people with pre-existing conditions – like myself and Lorelei – from being denied or charged more for coverage, or even completely cut from care by a lifetime max, is under threat by the party in power. Programs like Medicaid and Medicare are targeted for drastic cuts. If we don’t do something, in the very near future, I could lose the ability to care for myself and my family.

I am letting you know I need your help.

I need you to vote for lawmakers who will ensure ALL people have affordable and appropriate health care coverage. Our story is not an exception; we’re all one accident or illness away from needing health care. While illness may not affect you today, it surely affects someone you love. It affects people I love.

I need you to vote because our lives depend on it.

Like most couples, when we dreamed of having a child we dreamed about our child laughing, playing, growing up strong and smart, going off to college, having tons of friends, being part of a community, falling in love, and one day maybe starting her/his own family.  When we decided to have our first child, we were young, healthy, working parents who assumed we’d find great childcare and be able to continue our lives (although maybe a bit more tired than before) as we always have.

Our first child, Ryler, was born in June 2011.  He was full-term, but to our surprise, only about 4lbs and had a significant cleft lip and palate which prevented him from sucking. We spent several weeks in the hospital with him undergoing numerous tests from specialists to determine what other medical challenges he had, and learning how to feed him. We eventually discovered he has a genetic disorder none of the doctors had heard of, swallowing issues which required a feeding tube for a couple years, has a few heart defects, a bleeding disorder that required transfusions and causes excessive bruising and bleeding, is immune deficient, hearing impaired, has microcephaly (small head with abnormal brain development), seizures, significant intellectual disabilities, and he would require extensive early intervention and continuous therapies to learn what most of us take for granted – how to eat, walk, talk, hold things with his hands, etc. Today, he is followed by almost 15 medical specialists to manage his care.

After learning all this about our son, the dreams we had for him before he was born didn’t dissipate, but our focus shifted to understanding his medical issues and how to navigate our new world together. Our dreams may have changed a bit, but during those early days, and still today, the most important thing we want for our son is that he be given a CHANCE. We believe that everyone deserves one. We want Ryler to have a chance to develop to his fullest, to love and care for others and be loved and cared for by many, to go to school and learn, to have friends, play and laugh, and just be a kid.     

We were fortunate Ryler was born 15 months after the ACA (Affordable Care Act a.k.a “Obamacare”) became law.  Because of the ACA, we don’t have to worry about lifetime maximums within our private insurance or pre-existing condition insurance discrimination, so Ryler can have access to the many wonderful specialists who work with and believe in him. Thanks to our Medicaid waiver which helps our family cover things, like therapy, that private insurance doesn’t, Ryler has been given the chance AT LIFE we dreamed of.  

It is frustrating to us that many don’t realize how crucial affordable, quality medical insurance and programs like Medicaid are. Many people don’t appear to understand what they cover, how they protect the most vulnerable Americans, how close they themselves may be to needing ACA protections one day (if they don’t already), or how devastating it can be to go without.  Raising a medically complex child can be financially devastating, no matter your income level. Many families like ours need one parent to work in the home to care for their sick child (Ryler’s amazing Daddy in our case) and are down to one income; making health care costs even more of a challenge. Our private insurance and Medicaid pay for extremely expensive antibodies that protect Ryler from illness, his seizure medications, home nursing, and therapies. Medicaid even gives children like Ryler the ability to go to school with medical care in place, rather than being forced to teach him at home where he’d have little social interaction.

Today, Ryler is an extremely happy, strong, playful, spunky, loving seven-year-old.  He adores his family including his little brother, Reece and medical alert dog, Oaty.  He loves going to school and gives the best kisses. Ryler has proven many doctors wrong over the years and we’ve learned so much from him, simply because he was given the chance to be a little boy – to learn in an environment appropriate for him, and to receive crucial, life-saving medical care. As a family, we’ve been with him during countless medical procedures, surgeries, hospital stays, ICU visits, ambulance rides. We have even seen him near death after complications from procedures.  But one thing that has saved our sanity and allowed us to focus on caring for our sweet little boy is knowing he will always have the health care coverage he needs. If we don’t vote to protect our care in November, GOP leadership has said they will once again try to strip families like mine of that lifeline. Please be a health care voter and help kids like Ryler have the chance they deserve.