Celebrating Father's Day, by Josh Fyman
Penny_1.jpeg

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.  

Penny.jpeg

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.  

Penny_2.jpeg

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
Little Lobbyists Statement on Short Term Limited Duration Insurance CMS-9924-P

Submitted to www.regulations.gov/docket?D=CMS-2018-0015 April 19, 2018

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-9924-P

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  

America badly needs changes to health care laws and regulations that expand access to care and decrease costs; however, these changes must not come at the expense of necessary care and financial protections for vulnerable children and their families.  Unfortunately, that is just what the proposed rule would do. By allowing “short term” insurance plans for up to a year in length that would not contain basic protections provided by the Affordable Care Act – including the prohibition on discrimination against individuals with preexisting conditions and the prohibition of annual caps on medical care – children with complex medical needs across the country, and their families, will be harmed in multiple ways.  

As is the case with many medical conditions, parents of children with complex medical needs are frequently not in the position to know about and anticipate the care their children will need, through no fault of their own.  For such families, the protections afforded by the Affordable Care Act are literally life-saving. Children born prematurely, or with other complex medical needs, often require extended hospital stays with medical care billed into the millions of dollars.  The need for comprehensive medical care frequently continues long after they are finally discharged home. The protections in the Affordable Care Act ensure that insurance providers cannot deny coverage for medical care because their medical bills reach a certain threshold.  It ensures that they have access to lifesaving prescription drugs. It ensures that the preexisting conditions these children are born with will not prevent their ability to access care into the future.

The “short-term” insurance plans proposed in this rule eviscerates those protections.  Families purchasing such plans for health coverage, whose children subsequently encounter medical difficulties, will soon find these insurance plans to be worthless – failing to cover the specific, life-saving care their child needs, and taking coverage away completely if care becomes too expensive.  On top of the trauma and stress that comes with a sick child, these families will face financial ruin as well. While our focus is on medically complex children, this outcome is no less true for any individual who encounters unforeseen medical complications, be it through sickness or an accident.

The damage would not be limited to those families buying short-term plans created by this proposed rule.  For those families that remain in ACA-compliant plans to ensure they receive the care their child needs, the cost of insurance premiums would increase, leading to financial hardship – realities that the proposed rule explicitly concedes.  Once again, children and families who are most in need of care and financial protection will be the most negatively affected.

As we stated at the outset, America’s health insurance system needs fixing.  Access to care must be expanded so that all Americans can receive the care they require, and the cost of this care must be controlled so that financial hardship and bankruptcy due to medical care is reduced to a terrible relic of bygone days.  There are ways of meeting this vital goal. Americans demand it. Unfortunately, this proposed rule, which provides a path to less comprehensive care and higher medical costs for our nation’s most vulnerable, is a harmful leap backwards.

On behalf of the millions of children with complex medical needs and their families, we ask that the proposed rule be rescinded and replaced by one that truly sets access to comprehensive and affordable health care for all Americans as its cornerstone.

Spread the Word to End the Word by Laura Hatcher

By Laura Hatcher, Simon's Mom

stwtetw.png

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.

simon_grass.jpg

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.

151125224106-donald-trump-mocks-reporter-disability-00002017-1280x720.jpg

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.

simon_runningfestival.jpg
HR 620, Call to Action by Ben Zeitler

Friends of Little Lobbyists:

My son, Pierce, is four. He enjoys school tremendously. He is in his terrible fours, which he carried over from being three. He is extremely opinionated. Pierce just wants to play with his friends and his toys and terrorize his parents, like any good four year old does. He is learning and growing and doing great. Pierce also has some medical complexities: he cannot hold his own body up, is deafblind, has a tracheostomy, is fed through a tube, and relies on a wheelchair to get around. He is non-verbal. Even with everything just mentioned, Pierce is really just a normal kid. He is thriving in large part due to his resilience, but also because of the protections afforded him by both the Affordable Care Act and access to buildings and services because of the Americans with Disabilities Act (ADA).  The ADA gives people with disabilities equal access to things that may not have been accessible prior to 1990.  For example, this means that when my family visits a restaurant, we know that there will be a wheelchair accessible entrance we can use. There are many children similar to Pierce and unfortunately, the US House of Representatives, in late 2017, passed a bill through the House Judiciary Committee which could make it harder for families with children who are medically complex, as well as others with disabilities, to have access to the same spaces as everyone else. It died down for a while, but now this bill is back and could be brought to a floor vote as soon at 2/14/2018 or 2/15/2018.

Sometimes it is difficult for our children to do things because their equipment is big and bulky; they sometimes can’t go up or down stairs, or squeeze into small spaces. They sometimes struggle to have access to the same businesses, schools, education, and restaurants that everyone else can easily attain. Now some members of the House want to make it harder. We shouldn’t stand for that.

The bill is called H.R. 620 – The ADA Education and Reform Act of 2017. The bill doesn’t really focus on education though. Instead, it is a way for businesses to delay, or get out of, making accommodations for people with disabilities by putting the onus on the victim, not the business. The basics of the bill require the person who is aggrieved or doesn’t have access (as is now protected by law) to find out who the owner is, write a letter (including referring to the section of the ADA the owner is not following), wait up to 60 days, receive a letter, wait up to 120 more days and then take them to court. Even then, if the business has shown to have made “substantial progress” then the case can be thrown out. This is hard and confusing to understand, not to mention completely unreasonable for a non-attorney to complete on their own. This means that if, for example, your child’s therapist is in a building without a ramp, the owner wouldn’t have to build one right away. They could delay for six months and there is nothing that you or a lawyer could do about it. HR 620 would prevent you from being able to bring forth a lawsuit immediately. Basically, your legislators want the person who was discriminated against, and doesn’t have equal access, to wait. Someone who is of a different race or creed would not have to wait six months to file suit if they were turned away service or had to sit in a different section of a restaurant. It is not right that people with disabilities must wait six months (or more) for access.

Instead of making things better for our kids (and adults – who they will all eventually become) who have complex medical needs, this law would make it harder. This law would allow people to discriminate against our children and make them wait for equal access. This should not be tolerated. I do not want my son to be considered a second-class citizen. I want him to have all the access that anyone else does.

Supporters of this law have argued that it would provide reduce frivolous lawsuits and give businesses the chance to comply with the law rather than being sued immediately. The thing is, there are not many frivolous lawsuits to begin with. Furthermore, business owners and the Federal Government have had almost 30 years to understand and get used to the ADA. Everyone knows what it is and what the rules are. This bill is not going to make things better for people with disabilities. It is just going to make everything less accessible and less equal by delaying and stalling and treating my child like someone who doesn’t deserve access like everyone else. I will not stand for this. YOUshould not stand for this.

Please call your House representative and urge them to vote no on this bill. You can reach the congressional switchboard at 202.224.3121 and provide them your ZIP code and they will connect you to your representative. You can also go to http://www.house.gov and in the upper right corner enter your ZIP code to get your representative so you can contact them directly via phone or email or at a town hall. If you would like more information about H.R. 620 – The ADA Education and Reform Act of 2017, below are some resources.

Resources:

LegislationLaura Hatcher
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
I’m Jackson, and I speak for the children.

A speech by Jackson, age 12, given at the #ProtectOurCare rally on September 6

 Jackson and his brother Henry at the rally.

Jackson and his brother Henry at the rally.

 

Good morning. My name is Jackson Corbin and I am 12 years old. My brother, Henry, and I have Noonan’s Syndrome which means we have a lot of health issues and we spend a lot of time at the doctor.

I love the Dr. Seuss book, The Lorax. My favorite line is “I am the Lorax and I speak for the trees.” I love how confident the Lorax is and how he knows he must speak for those who cannot. I think I’m a lot like the Lorax. I’m Jackson and I speak for the children.

Henry and I have been coming to Capitol Hill since March fighting for healthcare. In July, we teamed up with the Little Lobbyists to help them fight too. We visit Members of Congress to tell them stories of children with medical complexities. Most of these children can’t come to speak for themselves. Some live too far away to come to Washington
D. C., some are too sick to travel, and some children are unable to speak at all. But that doesn’t mean they shouldn’t be heard.

You may wonder why kids think they have the right to stand up and speak for their healthcare. You may think we don’t belong on Capitol Hill. Well, we might be kids but we’re still Americans.

When we hear our Members of Congress talk about repealing the ACA or cutting Medicaid, they’re threatening our lives, our liberty, and our pursuit of happiness.

In six years I get to vote and, believe me, I will remember all of this. I will remember the Senators who heard our stories, smiled, patted us on the head, then turned around and voted to take our care away.I will remember you.

No matter how long it takes, I will keep fighting until all voters and all Members of Congress understand the importance of the ACA to children with medical complexities in the United States. The ACA/Medicaid gives our parents the opportunity to focus on our care, our education, and our well-being without having to worry about how they will pay for our medical bills. We deserve the chance to be healthy, to grow up, and to lead this country one day.

I want to thank all of you for fighting for us. We cannot do this alone. It’s so important that we work together to fight against anything that hurts the poor and the sick.

I told you that I love the Lorax and, actually, I have a second-favorite line from the book. My Mom says it to me and Henry every time we make the long drive from Pennsylvania to Capitol Hill. I want to share it with all of you and I challenge each of you to say this to yourselves every single day: “Unless someone like you cares a whole awful lot, nothing’s going to get better. It’s not.”

Let’s save the ACA, save Medicaid, and protect our care!

Jackson under the rainbow
Our Letter to U.S. Senators on the Graham-Cassidy health care repeal bill

Below is a copy of the letter that we have been delivering to U.S. Senators regarding our opposition to the Graham-Cassidy bill:

FullSizeRender_2.jpg


September 18, 2017

Dear Senator,

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  We have visited your office previously and hand-delivered the stories of medically complex children in your state whose health and future would have been jeopardized by the legislation under consideration at the time.

We write again because the pending Cassidy-Graham health care bill poses similar danger to the millions of medically complex children in this country, thousands of whom live in your state.  We ask that you stand up to protect our children, and demand that Congress do the same.   

Our current health care laws can and must be improved, about this there is no debate.  However, the Cassidy-Graham bill departs from recent good faith, bipartisan efforts and attempts a massive upheaval of our health care system without input from policy experts or those who would be most affected by its provisions.  In particular, the Cassidy-Graham bill undermines three protections in current law that are vital to the health and well-being of medically complex children and their families:  

  • Decreased Medicaid funding through “per capita caps” and “block grants”.  Private insurance frequently does not cover home/community-based care (such as private duty nursing) and therapeutic care.  Medicaid fills this gap, which allows medically complex children not only to live at home, but to thrive.  Cassidy-Graham’s upheaval of Medicaid will cut billions of dollars nationally from the program relative to current law, with no guarantees that the funds must be spent on the same population.  Under such funding restrictions, optional Medicaid programs, such as the Katie Beckett Medicaid waiver program created by Ronald Reagan to help families care for their medically complex children at home, will likely be among the first eliminated.  In short, under Cassidy-Graham, the vital safety net that Medicaid provides our children is slowly pulled away, with families like ours left to worry constantly whether it will be there when they need it.    
  • Eliminating the ban on annual/lifetime limits.   Many of our children accumulated millions of dollars in medical bills in their infancy before they ever left the hospital.  Under the ACA, insurance companies were prohibited from kicking our children off of insurance plans when their care reached a certain dollar amount.  Cassidy-Graham would allow states the ability to waive these protections.  This means that parents across the nation sitting bedside in Neonatal Intensive Care Units will once again have to worry not only about whether their child will survive, but also whether the hospital stay will leave them bankrupt.
  • Eliminating the ACA’s pre-existing condition protections.   Medically complex children are frequently born with multiple pre-existing conditions.  Protections against discrimination on the basis of these conditions give us the security that our children will not one day be denied affordable insurance because of conditions they were born with.  That security is stolen by the Graham-Cassidy bill, giving states broad authority to waive these protections.  This is contrary to the Republican Party’s own platform, which provides that “individuals with preexisting conditions who maintain continuous coverage should be protected from discrimination.”

We have heard politicians over the past few days tell us that the Cassidy-Graham bill will increase “flexibility” and “choice” for Americans.  That is flatly untrue for our families.  Rather, the bill’s provisions will fundamentally disrupt the safety net that our families depend on, likely leaving us only one unthinkable choice: incur debt far beyond our means, or forego medical care that will keep our children alive and able to achieve their God-given potential.

As we said at the outset, our nation’s health care laws can and must be fixed.  But it is unjust, immoral, and contrary to any reasonable meaning of “pro-life” to pass a health care law that makes it harder for medically complex children to access the care they need to survive and thrive.  Our children have done nothing wrong.  They do not lack personal responsibility; indeed, they show more strength, bravery, and resiliency in a single hospital visit than many people do in their entire lives.  They are just kids who, through no fault of their own, need a little help.  

You can help them now.  Stand with our children.  Hear their stories.  Work with us to ensure their access to health care is not diminished.  We will make ourselves available anytime of any day to discuss our concerns with you in person, and to assist in any way we can toward the goal of a health care system that works better for all Americans. 

Sincerely,

Elena Hung
Michelle Morrison
Co-Founders, Little Lobbyists

Austin Carrigg, Anna Kruck Corbin, Laura LeBrun Hatcher, Ben Zeitler
Steering Committee, Little Lobbyists