Posts in Thoughts
Every Child Deserves a Chance by Amy & Erik Boyle

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.     

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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.

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Don't Crowd-Fund Health Care, Vote For It. – by Tasha Nelson
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I’m conservative on some things and less on others. A true swing voter, a moderate. A Republican was as likely to get my vote as a Democrat —dependent on their voting history on issues important to me. Historically, I leaned more Republican than Democrat until last year, when the Affordable Care Act (ACA) came under fire and I became terrified that my son might lose the health care vital to his survival.

My son Jack is 7 and has a fatal genetic disease called Cystic Fibrosis. This disease is scary, profoundly expensive (just one of the 14 medications he needs to survive is $1,200 per month), excluded from life insurance policies, and fatal.

When Jack was born the full protection for pre-existing conditions provided by the ACA wasn’t yet in place. When he contracted MRSA (a very scary infection), I used up all my vacation time and FMLA to care for him and faced losing a job I’d held for 10 years, knowing my son’s disease made him largely uninsurable. I was terrified that if I lost my job, I’d also lose my son.

Fortunately, I was lucky. The CEO of the huge company I worked for had a heart. He learned of my dilemma and allowed me to work from home. What a relief that was! For 3 months I worked from home, feeling more secure, but still terrified. I’d experienced exactly how quickly my son could go from having all he needs – to having nothing at all. It wasn’t until the full protection of the ACA took effect in January of 2014 that I felt safe. For the first time since Jack was born insurance companies couldn’t discriminate against him by withholding coverage.

Others weren’t as lucky as I was. Their CEO didn’t save their job, their child was born, and died, before the ACA. In the history of health insurance in this country those of us with pre-existing conditions have only experienced 4 years of guaranteed coverage, and we’re already standing on the edge of losing it.

I am a mom fighting for her son’s right to live his healthiest life.

I speak from experience. I’m not a person raging from behind the safety of a keyboard, I’m not a person whose feelings are hurt easily, and I don’t make assumptions. I do speak in person with my politicians at every opportunity, and I actively seek those opportunities out. I educate myself before making any political decision (or post).

No candidate who voted yes on the Tax Bill that weakened that ACA or in favor of short-term “junk” insurance will get my vote. I am a #HealthCareVoter, my son Jack is a #LittleLobbyists, and Jennifer Wexton will get my vote over Representative Barbara Comstock, because Comstock has proven to me that she won’t protect us and she failed my son with her votes.

Many Republicans I’ve spoken with have argued that the Tillis Bill is the GOP’s answer to protecting pre-existing conditions. This is a half truth, at best. While the bill does prevent insurance companies from excluding people with pre-existing conditions all together, it does NOT require insurers to provide coverage for their pre-existing condition – or prevent their premiums from being far more expensive.

I used to be a swing voter that leaned Republican. But, now that the Republican Party has reduced rare disease tax credits, is not protecting people with pre-existing conditions, and moved (in my opinion) far too quickly on a decision about a lifetime Supreme Court Justice who could determine the future of health care in this country... the GOP has single handedly forced me to move steadily and solidly to the left.

My family is a working, lower middle-class family, with a Federal health insurance plan. Between now and December we will work hard to pay all of our 2018 medical costs, because typically by February 1, 2019 we will owe $9,000 again.

We participate in grants and medication coupons to help us, but because of the new accumulators payors introduced this year (our insurance is one of them) which don’t count coupons and grants towards our deductible or out of pocket max, we’re likely going to owe even more next year. Meanwhile the insurance company will receive our deductible twice – once from our coupons and grants, then again from us directly.

This week I started selling our things on Facebook to help cover our medical bills, which is normal for many families dealing with expensive illnesses, but was somewhat shocking to many of my friends who reached out with offers of help and crowd-funding.

While the offers were sweet, we respectfully declined. Crowd-funding Jack’s medical needs is not sustainable. Unless health care in our country changes, these expenses will continue to build for the duration of Jack’s life. The single biggest thing you can do to truly help families like mine, is VOTE for candidates who will protect access to affordable health care for everyone who needs it.


Why I’m Speaking Up by Stacy Staggs
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I wish y’all could have seen my face when I was handed a megaphone, of all things. Actually, it may be better my reaction was mainly internal, because I can tell you I did not feel nearly as confident as my picture portrays.

After more than a year of calling and emailing both of my US Senators, with hardly any response, I felt pretty ineffective. I was sure people would want to know the human cost of their proposed Healthcare changes. It had to be a mistake that both Senators had repeatedly voted to repeal the Affordable Care Act. They must not know what it means for my girls, and millions of children like them, who would be in mortal danger from such an unstudied and hasty change. To be fair, I had never approached them with a constituent issue in the past. Honestly, I didn’t even know their names until early 2017. Still, I had no way to anticipate the apathy I was greeted with by Senators Burr and Tillis.

I felt bold when I accepted the request from Little Lobbyists co-founder Elena Hung to speak (gasp!) in front of people (gasp!) at a political rally (gasp!), but in the days leading up to the #StopKavanaugh rally in Atlanta, my courage evaporated. I was left with the feeling that we all experience when asked to speak in public – all kinds of scary scenarios ran in a loop in my head. What if I fall over? Has anyone ever barfed at one of these things? Fainting seemed like a real possibility.

In the car, I poured over my carefully written remarks and practiced the purposefully placed pauses to my family, who listened in hopeful support. Together, we navigated through downtown Atlanta in our matching Little Lobbyists t-shirts and marched to the rally site. As I watched the three speakers ahead of me, I already felt the support of the crowd. This was a safe space filled with like-minded, active citizens who were angry about what we’re seeing come from our legislators. The unrest was pointed away from me, aiming straight for Washington DC.

Megaphone aside, when I spoke my first words, “My name is Stacy. I also answer to ‘Mom’, ‘Mommy’ and <ASL sign for ‘Mom’>…” I knew the crowd was already on my side and full of encouragement. I continued to tell the story of my beautiful twin toddlers, former micro-preemies who have fought every minute of their five years on this earth to stay with us. My voice broke as I shared snip-its from the early days in the NICU, when my willpower and determined stare were not enough to bring up oxygen saturation. The helpless feeling we have when the monitors are blaring and nurses move swiftly to intervene. I did my best to convey the impossible fragility of a 2lb newborn that has more wires than skin. When I waivered, I felt hands on my shoulder. I heard calls of encouragement from the crowd. I looked into the sea of faces and I saw genuine concern. Not just for our plight, but for the ongoing threat to their lives from a political party bent on undoing the accomplishments of the prior administration.  

I ended my speech by asking for help. Beyond outrage, we need action. We need concerted efforts and relentless outreach to our legislators.  Every day and twice on Sunday, we need calls, office visits, tweets and signs of protest to keep these critical issues top-of-mind. In April, I promised myself I would do at least one thing each day toward the goals of voter registration and story sharing. I see my daughters faces’ in the daily pictures of “100 Little Lobbyists Who Need You to Be a Health Care Voter” series we are sharing on social media.  

I am a newly minted parent activist and I know there are more of us out there. I know you’re angry and worried about what’s happening. You want to get involved, but you’re constantly exhausted and a little unsure about how to take the next step. Recent weeks have been especially difficult for us. We have witnessed conduct that would have been unthinkable until it all unfolded on our televisions. It would make perfect sense to recoil in despair.  

But consider this: What if we continue to speak up? What if our actions become stronger than our fears? What can we accomplish if we keep going? Just like we have done with our children and their medical teams, we can continue to advocate for them to reach their highest potential. I can help you. You can help me. We can do this together! Who’s with me?


A Book that Shaped Me: Best Friends on Wheels by Debra Shirley, By: Ben Smith (5th Grade)
 The author and his sister, Little Lobbyists Ben and Claire Smith

The author and his sister, Little Lobbyists Ben and Claire Smith

Best Friend on Wheels shaped me because it taught me that it is okay to have a sister with a major disability. Before I read this book, I thought it was not okay to have a sister with a disability. Although I am ashamed to admit it now, I was embarrassed by my older sister Claire who has a microduplication of chromosome two, uses a wheelchair, is autistic, and has many other medical issues.

You may ask how did this book teach me that it was okay to have Claire as my sister? Best Friend on Wheels taught me this because it is a book about a girl with a similar disability.  At the beginning of the book Sarah, a girl with a disability, rolls into the classroom and a girl stares at her wheelchair but does not look at Sarah. At first, she looks away, embarrassed that she might say something wrong and hurt Sarah’s feelings. This is like when I was younger and I always stared at Claire’s wheelchair and thought that she would not be able to play with me. Now I am ten and I think of Claire’s wheelchair as a neat accessory like a piece of jewelry rather than as something that makes her different.

A lot of people stare at Claire when we walk to a toy store in our neighborhood and think that she cannot communicate what she wants. This reminds me of a part of Best Friend on Wheels when Sarah and her friend go to get ice cream and the lady at the counter asks Sarah’s friend what would she like thinking that because Sarah has a disability she cannot talk. Although my sister cannot talk, she can point and let us know which toy she wants that way, but people do not always give her the chance to do so.

Best Friend on Wheels showed me that people underestimate kids with disabilities all the time, not just my sister, and that I had to speak up for my sister so that people would realize what she is capable of. I’ve continued to do this by going to Capitol Hill and rallies to speak up for kids with disabilities and will do so for the rest of my life.

When the girl in Best Friend on Wheels becomes friends with Sarah, it is not because she feels bad for her for being in a wheelchair, but because of her pins showing that she is a “ROCKHOUND.” This may seem unimportant, but it is very important because it shows that people with disabilities can like the same things as people who do not have disabilities. The girl in the book did not notice Sarah’s pins at first because she was too busy staring at Sarah's wheelchair. When she does look beyond Sarah’s wheelchair she realizes they both collect rocks and have a lot of other things in common too. This showed me that people with and without disabilities can have a lot in common if they just take the time to talk to each other, even if what they have in common is just watching movies or reading books.

Best Friend on Wheels taught me that it is okay to have a sister with a major disability because it showed me that a person with a disability can do everything people without disabilities can do too. Just like the two friends in the book, I have learned that I can do everything with my sister Claire that my friends can do with their siblings. We enjoy going to amusement parks, eating ice cream together, swimming, and playing games.

Thanks to Best Friend on Wheels I stopped being embarrassed that my sister had disabilities and realized how much fun I could have with her. Now she is one my best friends. I am so glad I am not missing out on having so much fun with her just because of her wheelchair.


Ben's essay was a finalist in the Library of Congress' 'A Book That Shaped Me" contest. He was recognized for this accomplishment at the National Book Festival in Washington, DC on September 1, 2018

Click here for a link to where you can purchase the book, Best Friend on Wheels by Debra Shirley.

 

Celebrating Father's Day, by Josh Fyman
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This Sunday, I’ll be celebrating Father’s Day as a dad for the eighth time. My first one was pretty easy albeit uneventful, “uneventful” later becoming an eternal goal in our lives. My daughter Penny was born in the spring of 2011, and for the first three months of her life, she exhibited all the signs of a healthy baby girl.  

That’s when she started doing this thing with her arm. That’s what we called it, an odd, repetitive motion. We brought her to her pediatrician, explaining that she kept doing “this thing.” He observed her, and within a minute, Penny did it again. He instantly instructed us to take her to the emergency room at Cornell Medical Center, explaining that she was having partial seizures. Within 48 hours I no longer had a healthy baby girl. I had a daughter with Aicardi Syndrome; a severe developmental disability that only impacts girls. It includes epilepsy, intellectual disability (severe in Penny’s case), physical disabilities (also severe with Penny), and communicative difficulties. Penny cannot talk or willfully communicate aside from a whine when she’s unhappy, a squeal when she’s happy, and occasionally tapping the table when she wants an object.  

It’s still remarkable to reflect on how the life that I had envisioned for myself and for Penny had been obliterated and replaced with a different one, one far scarier and more uncertain, in the space of a couple of days. Even scarier was how isolating it felt to have a daughter with an illness so rare you could potentially go years without meeting another person affected. My first big break was finding a support group for parents of Aicardi children online. The feeling of belonging and support got me through those first months. It wasn’t only people helping each other and it wasn’t just the moral support, both of which were huge. It was the pictures I saw and stories I read about families having fun with their daughters – the girls getting to enjoy beautiful experiences in their communities, out in nature, on road trips, and in school. I read dispatches from normal life, people simply talking about “normal” stuff, like going to the movies and out to dinner.  

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Something that was rare in the group (though certainly not absent) were posts by dads. I don’t know exactly why dads are less likely to participate in such groups – if it’s simply not one’s thing, great – but I’ve spoken to some dads who claim they don’t feel it’s meant for them. They feel intimidated by how overwhelmingly female such groups sometimes are, or are embarrassed. It is not, however, because they are less interested. I have come to know some of the most spectacular special needs dads that I could ever meet. I’ve known dads to build entire rooms to accommodate their kids, convert a van themselves, carry a 60-pound daughter miles through the hilly woods because she loves it, change jobs and move the family cross country for better services for their children, and create enough adaptable devices (and Halloween costumes!) to earn an engineering degree.  

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There’s been a lot written about how special needs dads can be overlooked or are more likely to be silent about their child, so I want to dedicate this Father’s Day to all the special needs dads who are pouring their heart into their kids. I don’t know if I would have even thought to do all I do with my kids without your inspiration. I thank you for that. And thank you from the entire special needs community for doing more than most people even know is possible.   


There are many ways to support Little Lobbyists and get involved!

If you are the parent or guardian of a child with complex medical needs and/or disabilities, share your story with us here. If you would like to learn more and stay in touch, connect with us here. If you would like to donate to help us continue our work, please click here.

Thank you!

You're The One You've Been Waiting For, by Laura Hatcher
 Finding my voice with the Little Lobbyists.

Finding my voice with the Little Lobbyists.

I know a lot of people say they don’t like to “talk politics.” I was once one of them. I was informed, I cared, and I voted, but talking about politics just seemed too icky.

So I surprised myself a little when I decided to begin visibly and vocally engaging in politics. Aside from a term on middle school student council (one year as president, thankyouverymuch), it wasn’t something I saw in my future. I’m a graphic designer who loves helping people communicate but doesn’t particularly like conflict. I design, teach, and try to help create a more beautiful world, work which has always fulfilled me.  

Until, suddenly, it didn’t seem like enough. A little over a year ago, the political powers-that-be began to overtly threaten my disabled son Simon’s health care, education, and civil rights. Our country had changed in a scary way. I lost the privilege of sitting on the sidelines believing everything would be “okay.” A privilege I’m sorry to say I’d taken for granted the previous 8 years.

I do have some prior experience diving headfirst into dark water, ever since a doctor told me there was something “very wrong” with my baby's brain. Any parent of a medically complex child could tell you some variation of the same story: their baby was sick and the pediatrician couldn’t help, so they sought out specialist after expert specialist. Farther and deeper they searched until they found someone with answers. Perhaps, like me, they even found themselves plunging into previously unfathomable depths (shout out to NIH Undiagnosed Diseases Network!). But ultimately, on this voyage we each discover that there’s no one better than ourselves to navigate these unchartered waters with our children.

One day you realize the expert you’ve been waiting for is you.

You read the wonky medical journals and memorize the vocabulary. You even train the residents about your child's conditions (OMG so YOUNG!). You learn how to separate fact from BS and you refine your advocacy – polite but very firm – until you have just enough fire glinting in your eyes for folks to know not to cross you. You will get what your child needs whatever it takes.

It turns out those skills are exactly what you need to be an effective political activist.

Instead of medical journals, you read equally wonky policy articles and memorize some new vocabulary (bad news: still lots of acronyms, good news: less Latin!). You train staffers (OMG why are they all so young?), separate fact from BS, and advocate with the same firm, fiery, politeness. You will get what your child needs whatever it takes.

It also turns out that both physicians and politicians are just people you need to communicate with.

Sometimes the communication is icky. Some people can’t, or won’t, help you. Some will lie to you. Others will tell you like it is, but admit they don’t actually care much.

But, sometimes, it isn’t.

Sometimes, people will listen, tell you like it is, care, and help you. You’ll see the fire in your eyes reflected in their own. You’ll learn they’ve been fighting for you all along and it’s stories like yours that inspire them.

Our stories are powerful. These are our truths which we hold to be self-evident. The love of a parent for a child; of an American for justice, freedom, and equality. It’s not a perfect union, but a work in progress we must all participate in.

Sometimes, people cry with you. The first Senator I visited, Debbie Stabenow from Michigan, had tears in her eyes as she took my hand to tell me she was so happy to meet us, but so sorry we were there because our government is threatening our vulnerable children.

 Meeting Senator Stabenow (Simon requested snacks... fortunately she had lots of Kellogg's cereal on hand! Did you know Kellogg was based in Michigan?)

Meeting Senator Stabenow (Simon requested snacks... fortunately she had lots of Kellogg's cereal on hand! Did you know Kellogg was based in Michigan?)

Sometimes, people race to be at your side, the way Senator Wyden ran to meet us the cold, rainy night of the “People’s Filibuster” of the GOP Tax Bill.

 Senator Wyden talking about the impression our kids with complex medical needs made on him at the night time People's Fillibuster. He was very kind and very, very tall.

Senator Wyden talking about the impression our kids with complex medical needs made on him at the night time People's Fillibuster. He was very kind and very, very tall.

Sometimes, people give you hope. I’ll never forget shaking Senator McCain’s hand and thanking him for his vote against the repeal of our health care. His face was bruised from battling cancer but his gaze was strong and steady as he told us he cared about us. He said he prays for our families every day, and we pray for him and his.

 My husband Brian shaking hands with Senator McCain. This is Brian's "wow" face. Because, wow. Also, it was Halloween and we went trick-or-treating in the Senate (as one does) and that is a giant seahorse costume we made for Simon's wheelchair. He was Aquaman. I don't always wear a Wonder Woman crown, just as needed. I'm thinking about keeping it in my handbag...

My husband Brian shaking hands with Senator McCain. This is Brian's "wow" face. Because, wow. Also, it was Halloween and we went trick-or-treating in the Senate (as one does) and that is a giant seahorse costume we made for Simon's wheelchair. He was Aquaman. I don't always wear a Wonder Woman crown, just as needed. I'm thinking about keeping it in my handbag...

Sometimes, people embrace you. Senators Schumer, Casey, Booker, Warren, Duckworth, Harris, Bennet, Cortez Masto, Hirono, Murray, Reed, Kaine, Murphy, Hassan (whose own son has cerebral palsy just like mine), Warner, Van Hollen, Cardin, Schatz, Baldwin, Gillibrand...have literally embraced our kids. (If you noticed a blue tint… well, friends, unfortunately that’s just how it is right now. Though not from lack of effort on our part, I promise. Yes, we will keep trying.) These legislators fight for our “Little Lobbyists” because as constituents they are their children, too.

 Senators Warren and Duckworth meeting some of the Little Lobbyists. So much love and so much cuteness right there.

Senators Warren and Duckworth meeting some of the Little Lobbyists. So much love and so much cuteness right there.

 Senator Murray invited us to visit for the holidays. I loved learning that she started her political career as a "mom in tennis shoes" advocating for education as a preschool teacher. The kids loved the candy canes. (If you look closely by my feet -- I'm the gal in the Santa hat -- you'll see Simon lying on the floor. He had a small seizure while taking this photo. One second after saying "cheese" his service dog Tigger brought me his meds and we treated him right there, on the floor of a Senate office. We Little Lobbyists keep it real!)

Senator Murray invited us to visit for the holidays. I loved learning that she started her political career as a "mom in tennis shoes" advocating for education as a preschool teacher. The kids loved the candy canes. (If you look closely by my feet -- I'm the gal in the Santa hat -- you'll see Simon lying on the floor. He had a small seizure while taking this photo. One second after saying "cheese" his service dog Tigger brought me his meds and we treated him right there, on the floor of a Senate office. We Little Lobbyists keep it real!)

Sometimes, people empower you. Leader Pelosi has invited me and many other parents to tell our stories at her press conferences. She carried our children’s names with her into the House of Representatives. My family’s story is now part of the permanent Congressional record. She even warned her colleagues not to “trip on Simon’s wheelchair” as they try to get between a special needs mother and the care her child requires. That’s on the record, too.

 Just a mom giving a speech in the Capitol at Leader Pelosi's press conference. You can watch  my speech here .

Just a mom giving a speech in the Capitol at Leader Pelosi's press conference. You can watch my speech here.

Leader Pelosi needed no explanation, premise, or pitch when it came to protecting our kids. She’s championed our children with complex medical needs and disabilities in every way she can. She’s a mother and a grandmother. To me, she demonstrates the impact of women in office -- they understand and vote for what our families need. Leader Pelosi knows our children and they know her, not as a political powerhouse, just as one more badass mama who loves them and protects them.

 Leader Pelosi thanking my daughter Olivia for being a great big sister and standing up for what she believes in. Yes I am crying, you would too.

Leader Pelosi thanking my daughter Olivia for being a great big sister and standing up for what she believes in. Yes I am crying, you would too.

 Leader Pelosi getting a hug from Little Lobbyist Charlie. No, our kids could not be any cuter.

Leader Pelosi getting a hug from Little Lobbyist Charlie. No, our kids could not be any cuter.

So, to all my fellow badass mamas (and papas) of kids with complex medical needs and disabilities who are already fighting and wondering what more they can possibly do, I see you. I know you’re the captain of a ship on choppy seas, made worse by the tempest our government’s created. It is terrifying to think of weathering this storm alone. So don’t.

There’s a light in this lighthouse and people who will row to shore with you. Just one year ago, we came together as Little Lobbyists, and we’re continuing to grow our fleet. Families like ours are all over this country – connecting, calling, writing, showing up. We learn, share, and communicate with each other and our legislators so our children will have the more just and beautiful future they deserve.

You already have all the skills you need. You’re the one we’ve been waiting for. Join us.

 Some of our Virginia Little Lobbyists families meeting with Senator Tim Kaine.

Some of our Virginia Little Lobbyists families meeting with Senator Tim Kaine.


There are many ways to support Little Lobbyists and get involved!

If you are the parent or guardian of a child with complex medical needs and/or disabilities, share your story with us here. If you would like to learn more and stay in touch, connect with us here. If you would like to donate to help us continue our work, please click here.

Thank you!





 

 

What Does Medicaid Mean to You? by Mark Morrison

Parents and family members of children with complex medical needs from across the country have sent us their stories. Stories of faith and hope, anger and tragedy. Stories that are written by parents in between daytime therapies and appointments, and those magic quiet hours between midnight tube feeds and 2am vent alarms. These stories that we have taken to Congressional offices can’t be boiled down to a representative few. Each and every child and family is different with different diagnoses and experiences but I felt it necessary to compile a few key quotes from these stories to illustrate what Medicaid is and what it means to these families.

Medicaid is one of the most frequented topics in the stories submitted to us. Parents have communicated to their Members of Congress through us the vital role that Medicaid plays in their lives and in the lives of their children. All of these parents have given permission to share their story here and I hope you will take some time to listen to them. Listen to their stories. See the worth in their children that they as parents see. And then call your members of Congress and tell them how vital Medicaid is to the families that need it.

Home Nursing Services

Home nursing services are vital to so many children who rely on Medicaid. Hillary and Ellen communicate this from experience to their Senators in New York:

“Among other things, Medicaid has provided my daughter with overnight nursing so that I can sleep at night, knowing that she is as safe as she can be. Before nursing I was so exhausted from her care, lack of sleep, and fear that she'd have a seizure overnight and I'd find her not breathing in the morning, that I couldn't give her the best care possible day or night...let alone do anything beyond that.”  - Hillary, mother of Esmé (6yo), from New York

“Losing Medicaid would mean losing our nursing, which would mean I can no longer work outside the home - resulting in the loss of our private insurance.” -Ellen, mom of Owen (14yo), from New York

And also Sheila, even though she doesn’t currently have nursing for her son, feels as though she is doing the work of one:

“I work as an unpaid nurse 24/7.  It would take a PDN (making $20 or more an hour) to replace me.  Going out and getting a job so I can get him off of Medicaid isn’t currently an option.  We need Medicaid to remain available as it is for kids like Sam.” - Sheila, parent of Samuel (13yo), from Idaho

The Ability to Contribute to the Community

Nursing services comes up as often as Medicaid does in the parents’ stories and you will see further evidence of that in some of the following remarks. In the form of nursing and many other vital services, Medicaid gives these families and their children the ability to be successful, contributing members of society through gainful employment. Nicole from Maryland and Gillian from Texas share the importance of Medicaid support for their children in relation to continuing employment and successful careers:

“My husband and I have good jobs and good private insurance. I have a professional degree and work as a lawyer. My husband works in management at one of the country's largest property management companies. We own our home, pay our taxes, contribute to economy as consumers, and generally work to be responsible citizens. We planned for years to achieve our professional and personal goals. What we did not plan for and could not have prevented was our son's medical condition. We did not plan to spend months in the hospital watching our baby fight for his life. We did not plan to face the choice of giving our son a tracheostomy or leaving him in a nursing facility to prevent his death. We did not plan the millions of dollars of surgeries, nursing care, tests, ambulance rides, hospital stays and medical equipment that he needs to stay alive and healthy. Everyone needs affordable health care and the option to enroll in Medicaid or a Medicaid waiver because as parents and as human beings we simply cannot plan for good health.  Sometimes, the smallest, most innocent among us are born with the most fragile bodies. America should support a healthcare system that doesn't require bankruptcy to deal with unplanned health crises.” - Nicole, mother of Pierce (4yo), from Maryland

“My husband and I are both public school employees.  I am a high school principal, and he is a middle school assistant principal.  Both of us have good insurance from our jobs. Without the ACA, Raphael would have maxed out his lifetime insurance cap during his first hospital stay.  Thankfully, in November he qualified for Medicaid through a special waiver program. My insurance only covers 7 weeks of home nursing a year. Medicaid has allowed him to receive in home nursing, physical therapy, occupational therapy and speech therapy.  Without this waiver program, we would have had to either have one parent quit our jobs or put Raphael in daycare and risk his health. I believe that Medicaid kept Raphael out of the hospital during his first cold and flu season. Medicaid has literally been a lifesaver for him.” - Gillian, mother of Raphael (1yo), from Texas

Being Able to Stay in Your Own Home

Many critics of Medicaid decry the cost labelling those who depend on it as a strain on society. But Elaine (North Carolina) and Susan (Illinois) outline how these services have allowed their children to stay at home preventing the need for their children to be forced into an institution which would cost the taxpayer much much more:

“Medicaid's Home and Community Based Services and Supports (such as Medicaid waivers like CAP/C) allow people with disabilities to live at home, which is generally far less expensive than their living in an institution. Cutting these services will end up costing the government much more because Medicaid is the primary funding source for long term care, including nursing homes and other institutions.” - Elaine, mother of Lydia (5yo) and Carol (5yo), from North Carolina

“It is an unfortunate fact that some children who are medically complex pass away. We neglect to talk about how to best serve these children, who may or may not have access to comprehensive palliative care and hospice services through insurance, and rely on Medicaid to allow them to live at home. My daughter was one such child. Having Medicaid allowed her to stay at home on hospice for the last two years of her life, with home nursing care meeting her needs. Without these benefits, she would have had to be hospitalized for months or even years in the intensive care. Not only would this care be more expensive, but it would rob us as a family of those last precious moments we celebrated while she was in hospice. Medicaid provides critical services to children on hospice and children who are dying. We cannot forget these children and their families.” - Susan, mother of Karuna (passed away at age 11 in 2014), from Illinois

Financial Security

Overwhelmingly, the parents that submitted their child’s story to us talked about experiencing bankruptcy or extreme poverty if Medicaid services are cut or lessened:

“Rowan spent a total of 286 days in the NICU and PICU. Without Medicaid/waiver programs, we would have gone into bankruptcy—which would have been a shame since we are small business owners who continually donate our services for others. Currently, her monthly supplies total more than $1000—and that's just what's covered by Medicaid. We pay an additional $500/month for the rest.” - Maggie, mother of Rowan (16 months old), from Georgia

“I am extremely terrified. I am a waitress that makes $2.25 an hour. Without Medicaid I will not be able to pay for the medications, doctors, supplies, or home health care that Gunner needs to have in order to survive and thrive daily. Without these things my sweet boy WILL NOT LIVE!!!” - Carol, mommy of Gunner (3yo), from Kentucky

“Cuts to Medicaid could be catastrophic for Jonathan and our family. We are a middle class family - we don't have a million dollars to pay for his care, to hire nurses, to buy medical equipment. Cuts to Medicaid likely will end up cutting his health benefits, and though we will do whatever we can to bridge the gap between what healthcare he needs and what healthcare he would get, we will likely go bankrupt trying, and I don't know that we will be able to get him what he needs, even then.” - Jessica, mother of Jonathan (3yo), from Massachusetts

Quality of Life

Finally, many parents, such as Shelly from Alaska, shared about the life and quality of life that Medicaid gives to their children. These life-sustaining services have played vital roles in these little lives:

“Saved her life!  Without Medicaid and services available, she wouldn't be able to speak or walk. Couldn't go to school or have friends and live with her adopted family who adores her. She would have died or been institutionalized (worse).”  - Shelly, grandmother of Claire (9yo), from Alaska

I will leave you with this final quote from Marta, a Little Lobbyists mom who has joined us on the Hill multiple times with her daughter, Caroline. Here is just a little bit of her story:

“Caroline didn’t start showing symptoms until after she turned 1 -- when she still wasn’t walking or even crawling yet. Then, around 14 months, she started choking on her food, she could no longer get her words out, and she struggled to hold on to her toys. My husband and I got the official diagnosis when she was 17 months old. We were stunned and completely devastated, but we promised her that we would give her a happy and full life no matter what. I never imagined that I would have a child who would depend on us for every aspect of daily living for the rest of her life. And I certainly never imagined I would have a child who would rely so much on a government program like Medicaid. But that’s the thing about life, everything can change in a second, and you never know when you or your loved one will have to turn to a program like Medicaid just to stay alive. Caroline and millions of kids like her who are disabled and chronically ill deserve a chance at life.” - Marta, mom of Caroline (7yo), from Virginia

Thank you to all of these parents and many more who submitted their stories to us to take to their Members of Congress. You all have helped us put a face on the need for a strong, robust Medicaid program in every state. To share your family's story with us, please visit our storytelling form by clicking here.

ThoughtsLaura Hatcher
Spread the Word to End the Word by Laura Hatcher

By Laura Hatcher, Simon's Mom

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The first time a doctor suggested that my son was mentally retarded was a shock.

Simon was five, and though he’d consistently missed milestones, his doctors and teachers said it was just “developmental delay” and recommended more therapy to help him catch up. Since he’d started life with a stroke and had multiple surgeries, it seemed reasonable he’d need a little extra time and help. I tried not to worry about the future, a delay was only temporary.

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Until it wasn’t. Simon was falling further behind. Testing revealed his academic skills had “plateaued” and his social skills were “abnormal.” Lots of charts with bell curves and deviant scores were drafted to explain what I couldn’t quite comprehend; my beautiful little boy with hydrocephalus, epilepsy, and cerebral palsy, also fit the clinical definition of mental retardation.   

The weeks following Simon's diagnosis brought a lot of research and reflection. I suddenly found myself noticing something that had always been there -- the careless way “nice” people used my baby’s medical condition as derogatory slang. It was a painful revelation. Every time I heard it felt like a stab in my heart, and I heard it often. People said it to describe something foolish, when annoyed by someone, angered by a situation, even to be self-deprecating. “Retarded” was a synonym for nonsensical, unworthy, lacking value, rejected. It embodied my deepest fears for Simon’s future as a person with cognitive and physical disabilities.

It’s well established that in our society fitness and intelligence are paramount. We define ourselves by what we “do.” What we produce has become more important than who we are. Achievement is virtue, work is worth. If a person cannot participate as such, they are marginalized. Look no further than current political rhetoric for examples: “makers vs. takers,” “poverty is a mindset,” work requirements for health care, and so on.

And of course, there’s this.

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With ongoing attacks to health care, education, and the ADA, our country is an increasingly hostile place for people with disabilities. If, as President Jimmy Carter famously said, the measure of our society is found in how we treat our most vulnerable citizens, we are falling far short of greatness.

My son, however, is not lacking. Through him I’ve come to rediscover the “better angels of our nature,” as Lincoln and Obama directed. Simon taught me that a person is more than the goals they score, the grades they get, or the money they make. We must learn to measure our value by the kindness we show, the laughter we share, and the love we create. Worth is intrinsic to every life.  

Simon’s diagnosis was six years ago. Since then, we’ve seen many specialists and most choose other (better) words to describe his diagnosis. Cognitive or intellectual disability describes the condition without denigration, helping us find a path for understanding. Though I’ve grown past my initial fears, the old echo of “retarded” still follows me. When I hear it, I worry about Simon’s future, about the stigma and ostracization he will face when he’s no longer a child and I cannot protect him.

All any parent wants for their child’s future is happiness, and the key to that happiness is being accepted for who you are. Fear of my son’s diagnosis made me reluctant to accept it, and inhibited my ability to accept him. But the scary part of “mental retardation” isn’t the condition itself. People with cognitive disabilities have meaningful lives, and bountiful gifts to offer those who choose to see them. The thing we should be afraid of is our acceptance of hate speech, which gains its meaning from crushing our humanity. It’s the rejection and devaluation the word “retarded” has come to define from use as a slur. And it’s time for that slur to go.

Spread the word to end the word.

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I Chose Life by Elena Hung

I chose life.

I chose life when my husband and I planned to have a baby.

I chose life when we celebrated the two little lines on the pregnancy test.

I chose life when I started to eat healthier, took my prenatal vitamins every day, and eagerly attended every appointment with my midwife.

I chose life at my 20 week ultrasound, when the doctor referred me to a maternal fetal specialist.

I chose life when the maternal fetal specialist said something was not quite right with my baby’s heart.

I chose life when we met with the genetics counselor, who used words like “abnormal” and “atypical” and “syndrome” and “termination.”

I chose life when I was labeled “high-risk” and scheduled for weekly monitoring.

I chose life when I had a million conversations with my doctors and midwives and prepared for every possible scenario.

I chose life when I was induced at 39 weeks because my baby stopped growing and her movements slowed down.

I chose life with each contraction in labor — gentle mild ones over three hours, crazy intense ones over twenty minutes — and when I brought her into this world with three quick pushes.

I chose life when I held her in my arms and kissed her moments after she was born.

I chose life when the neonatologist examined her at bedside and then rushed her to the NICU.

I chose life the next morning when the cardiologist recommended we transfer her to the cardiac ICU at the local children’s hospital.

I chose life when I sent her on her way, armed with the name Xiomara, which means “ready for battle.”

I chose life when we did Kangaroo care every chance we got in that hospital room full of life-saving machines.

I chose life when I handed her over to the surgeon who would perform her heart surgery when she was 11 days old.

I chose life when I pumped breastmilk for her round the clock for months on end.

I chose life when I attended rounds with the doctors every single day and obsessively Googled every new medical condition discussed.

I chose life when I walked her down to the OR to get her tracheostomy and feeding tube placed after she was unable to breathe and eat on her own after nearly three months.

I chose life when I did my trach care training and learned how to care for her medically.

I chose life when my husband and I took turns sleeping at her bedside in an uncomfortable hospital chair for 169 nights straight.

I chose life when we finally brought her home for the first time on a cold December day.

I chose life with every scary 911 call and terrifying ambulance ride that followed.

I chose life when I gave her manual breaths with the AmbuBag every time she turned blue and stopped breathing.

I chose life with every suctioning of the trach, every tube feeding, and every nebulizer treatment.

I chose life every time I forced myself to get back up after breaking down.

I chose life when I fired every therapist, home nurse, and doctor who didn’t have her best interest at heart.

I chose life when I powered through after days without a shower or sufficient sleep.

I chose life when I researched every therapy, medication, program, doctor, and procedure that could possibly help her in any way.

I chose life when I fought with our health insurance to cover the care she needed.

I chose life when I applied for Medicaid on her behalf to prevent our family from financial ruin.

I chose life when I gathered documents and applied for grants to pay for “non-covered benefits.”

I chose life when I helped her with her physical therapy exercises all day long, every single day, so she could finally hold her head up on her own at 8 months old.

I chose life as we learned sign language together so we could communicate.

I chose life with every new therapy toy or medical equipment acquired.

I chose life when we turned occupational therapy exercises into fun games every day.

I chose life when my husband and I attended one doctor appointment after another…after another after another.

I chose life when we loaded up the car and drove 9 hours to Cincinnati Children’s Hospital because they have the best Aerodigestive program in the country.

I chose life every three months when we drove to CHOP in Philadelphia because her pulmonologist there specializes in kids on home mechanical ventilation.

I chose life when my husband and I did her trach care every night and trach change every week to help prevent infection.

I chose life when I lugged her ventilator, oxygen tank, pulse oximeter, feeding pump, suction bag, and emergency bag everywhere we went.

I chose life when we enrolled her in a pre-k special education school program so she could socialize with her peers.

I chose life when we went to story time at the library and waved to the animals at the zoo and and played on the swings at the playground and splashed around in the kiddie pool and cheered loudly at baseball games and watched Sesame Street together.

I chose life when I fought for every chance for her to just. be. a. kid.

I chose life when I met my U.S. Senator and looked him in the eye as I told him why he needed to fight tooth and nail for my daughter.

I chose life when my friends and I walked the halls of the Senate office buildings all summer on behalf of medically complex children across the country in desperate need of access to affordable quality healthcare.

I chose life every single time, every single day. I am still choosing life for my daughter.

The Republican tax plan does not choose life.

It chooses to repeal part of the ACA, which will lead to 13 million fewer Americans with health insurance. Americans that include children with medically complex needs like mine.

It chooses to raise insurance premiums on the millions of American families who do not have the “freedom” to go without health insurance because of the medical conditions in their family.

It chooses to create over a trillion dollars in debt — debt that our children will have to pay off — so that corporations and wealthy individuals can have more money.

It chooses to create that deficit with the idea that they will make up for it down the road with hundreds of billions of dollars in cuts to Medicaid, the program that keeps our children alive and thriving.

In short, it chooses to threaten the quality of life of the most vulnerable amongst us, including our children.

If you support this bill, you don’t get to call yourself pro-life.  If you support this bill, you are not choosing life.

I chose life.  If you also choose life, join me in this fight.

~ Elena

Elena and Xiomara
Anonymity by Mark Morrison
LL stories

I keep thinking about anonymity. That’s what President Obama gave us. For 6 years, since my son’s birth in 2010, I was able to post pictures of my children to just my friends; to celebrate, to enjoy, and to brag about how wonderful they are, just like a lot of other parents do on social media.

We didn’t have to publicize my son’s story on national media outlets.

The ACA gave us the ability to focus on our children, not on saving healthcare for all Americans.

Why is it different now? Why do we have to tell the world who we are and what we are fighting for? Because it’s difficult and sometimes nearly impossible for people to care about an issue if there isn’t a face on it or they don’t know someone who is affected by it.

That’s why we’ve seen such overwhelming support from 275 parents from 48 states submitting their stories to not only us, but to many other story-collecting, awareness-raising entities, not because they are bragging about their kids or celebrating who they are (though that’s a big part of it), but because they want people to see that their children are real people, worthy of life, and endlessly valued. There’s been parents who have accidentally submitted their stories to us more than once; they’ve submitted their child’s story to so many places, they’ve lost track of who they’ve contacted and who they haven’t. That’s not pride in your child. That’s desperation. That’s very real fear. And that’s why we fight.

100% of parents who have submitted their child’s story to us have told us to share their stories with their Members of Congress. 95% of these parents have said they are willing to share their child’s story with media outlets. It’s such a high percentage because these parents understand the value of public pressure on their Member of Congress through the media. They have come to terms with releasing their child’s information, their diagnoses, their interests, their struggles. They’ve been open about how vital insurance and Medicaid are to the health and well-being, the survival of their child and their families (these are families who have every type of socio-economic status imaginable). They have shared their child’s story openly with the public in an effort to humanize their child and to show our nation’s lawmakers that a vote for humanity should not be partisan.

It should be a given.

ThoughtsLaura HatcherACA