Dear Josephine,

Yesterday your father shared the news that your wonderful mom, Samantha, passed in her sleep early Christmas morning. Though we knew your mom had been battling cancer for a long time with incredible bravery, we still can’t believe we won’t see her again and our hearts are broken. We know our grief and shock are nothing compared to the loss you and your dad are facing. 

Over the next days, months, and years many of those who knew and loved your mom will share stories about her so you may know her better through their memories. They will tell you about her childhood, college escapades, and days as a daring derby girl. They will reflect on her love for your dad, her joy in motherhood, her professionalism at work, her commitment to social justice. 

Those of us who knew your mom through her advocacy with Little Lobbyists have been sharing our memories with one another, paying tribute to the wonderful person she was. We’d like to honor your mom’s memory by telling you how much we loved her and how – because of her love for you – she worked to change our country for the better. 

Your mom met up with us in 2017 when the political party in power was trying to destroy our country’s health care protections, threatening our kids with complex medical needs and disabilities access to the care they needed to survive and thrive at home instead of living in a medical facility or institution. (We hope by the time you read this letter that idea sounds absurd, and that our country finally guarantees health care as the right your mom and all the Little Lobbyists believe it is.) That summer, a small group of families – your mom and dad included – knew it was up to us to protect all our children.  We showed up on Capitol Hill to tell our stories. A reporter who wrote about our families gave us the name “Little Lobbyists” in honor of kids like you.

To paraphrase our co-founder Elena (who befriended your mom a year earlier in the local trach group), your mom knew there wasn’t a thing she’d change about you, but there were countless things she would change about our country for it to become the place you need to thrive. She took you with her to Capitol Hill, so members of Congress could meet you and see whose life was at stake in the votes they took. She wanted legislators to understand that a better future is possible for ALL of us with the right policies. 

Your mom’s warmth opened the door, and her determination got you both through it. She made sure you met future and past presidential candidates, including our first female Black and Asian Vice President, so you’d be represented by those in power. She gave powerful speeches in the Capitol and countless interviews to reporters, telling your family’s story over and over again. 

She never, ever gave up. 

Everyone who met your mom loved her. She radiated warmth and kindness and could make the most nervous and new-to-advocacy feel like they belonged. Even in serious situations, she brought joy with her — dressing you up in the most adorable tiny pink Doc Martens, trick-or-treating in the Senate, celebrating victories small and large. She kept in touch. She always showed up. 

Little by little, you and your mom and all our Little Lobbyists families changed hearts and minds. We saved our health care protections and are working to create the change our country needs to be worthy of you as you grow. Our deepest sorrow is knowing you will grow up without your mom beside you, where she most wanted to be.

As you face the challenges and triumphs in your future, know that our Little Lobbyists family will always be here for you. Most of all, know how much of your mom is part of you. 

Your smile has your mom’s open, gracious warmth. Your deep brown eyes have her joyful, mischievous sparkle – always ready to get into “good trouble.” Most of all, you have her determination. Your mom frequently beamed with pride when sharing your determination to reach each new milestone – eating, walking, climbing – and we all knew your spirit came from her. 

Dear Josephine – stay determined. Stay open and warm, joyful, a little mischievous, and always ready for good trouble. We promise we will keep showing up for you and all our families – in honor of your mother’s indomitable spirit – to create a country worthy of us all.

All our love, always, 

Your Little Lobbyists family 

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“The minute I met her I felt like we’d been friends forever. She was a bright and fierce force of nature. So much so that when you came within 50 feet of her she had her own gravity that pulled you in. She was a badass, an amazing friend and a person who always told it like it is.” - Tasha

“Sam was an amazing friend and mom. You could always depend on her, and we could talk for hours. She used to tell me so many stories about Jo, and man, she loved that kid. Sam was love and fire and determination- an incredible person.” - Caroline

“Sam was one of the first moms to welcome me into the Little Lobbyists crew. I remember sitting with her at an event and asking her a million questions about her home health nurses. She’s a big part of the reason I’m about to start back to work as a pediatric home health nurse.” -Alison

“Sam was so fun, and so kind. I’ll never forget how she drove over an hour to come to my daughter’s skateland fundraiser for Lymphoma. She showed up with a huge smile and an even bigger hug. She was wearing her derby girl best and had attached rainbow lights to Jo’s wheelchair. It was pure joy to watch her fly around the rink.” - Laura

“I was immediately impressed with Sam's sense of humor and her dedication to saving health care. No matter what, Sam was up for advocacy, even as she and Jo each dealt with their medical needs. I wish I'd had longer with her.” - Jeneva

“Sam was my favorite kind of person from the moment we met: equal parts kind and badass, thoughtful and spontaneous, funny and serious. She was a bold leader who knew she was part of something much bigger than herself, always making others feel welcomed. Truly one of a kind. We bonded over our feisty daughters (often joking about how they were the boss of us) and we never forgot what was truly important.” - Elena

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

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

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

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

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

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

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

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

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

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

The author Jeneva and her son, Robert. 

In recent days there have been many troubling allegations regarding Judge Kavanaugh’s past. However, even before these allegations came to light, there were known facts about the Judge’s past rulings and legal opinions that make him a threat to children with disabilities and complex medical needs’ future health care, education, and civil rights.

Once appointed, the next Supreme Court Justices’ rulings will have a long and lasting impact on our children’s future, and no amount of calls to our legislators will influence his decisions. As advocates and as parents it is critical we take a stand now and tell the Senate not to appoint a judge to the highest court in our country who is a threat to our children’s future. Our children deserve a Justice who will defend them (almost) as well as we do. That Justice is not Judge Kavanaugh.

Here are three reasons Little Lobbyists opposes the appointment of Judge Kavanaugh to the United States Supreme Court. We ask you to read and share with your fellow special needs parents, your friends, family, and most importantly with your Senators.

1. Kavanaugh is a threat to our children’s health care.

Judge Kavanaugh has said he thinks the supreme court should not have upheld the Affordable Care Act, which protects people with pre-existing conditions against being denied health care, being charged more for health care, or for anyone having a cap on their lifetime coverage for health care.

Judge Kavanaugh has stated that he feels it is okay for the President not to uphold or defend a law he disagrees with, like the Affordable Care Act.

There are already cases challenging the Affordable Care Act making their way to the supreme court. If appointed, Judge Kavanaugh would likely have a deciding vote in taking away the vital protections our children’s ability to access health insurance relies on.

2. Kavanaugh is a threat to our children’s education.

Judge Kavanaugh supports school voucher programs which routinely force students with disabilities to waive their rights under the Individuals with Disabilities Education Act (IDEA) to a free and appropriate education. Voucher programs divert funds away from already underfunded public schools which are required to recognize the rights of children with disabilities and complex medical needs.

3. Kavanaugh is a threat to our children’s civil rights.

Judge Kavanaugh ruled that people with intellectual disabilities do not need to be consulted, or have their wishes considered, before elective surgeries are performed on them (including abortions). In employment discrimination cases, he has consistently ignored/discounted the evidence provided by people with disabilities in favor of explanations provided by the employers. His overall interpretation of antidiscrimination laws, including the Americans with Disabilities Act (ADA), and the role of administrative agencies in charge of enforcing those laws limits their ability to protect people against discrimination.  

To contact your Senators we recommend you call the Senate switchboard directly: 202-224-3121. You can also use this email tool from our friends at The Arc USA.

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For additional resources to further explain Little Lobbyists position, please see these related articles:

On Health Care:

The fate of the ACA could turn on Judge Kavanaugh’s appointment, VOX

Supreme Court nominee Brett Kavanaugh could deal death blow to Obamacare, USA Today

What’s at Stake with the Supreme Court Vacancy, Protect Our Care

On Education:

Kavanaugh Could Unleash School Voucher Programs Throughout the Nation, National Education Association (NEA)

A dig through Kavanaugh’s record on education finds plenty of material, POLITICO

School Voucher Programs Should Be Clear About Disability Rights, Report Says, NPR

On Civil Rights for people with Disabilities:

Employment Discrimination: Review of Disability Related Cases Involving Judge Brett Kavanaugh, Bazelon Center for Mental Health Law

Review of Disability-Related Cases Involving Judge Brett Kavanaugh, Consortium for Citizens with Disabilities (CCD)

Kavanaugh Thinks It’s Okay to Perform Elective Surgery on People Without Their Consent, Talk Poverty

Disability Activist Elizabeth Weintraub testifies about the danger that Brett Kavanaugh poses to the disability community, C-SPAN (video)

AUCD Opposes the Nomination of Judge Brett Kavanaugh to the Supreme Court of the United States, Association of University Centers on Disabilities (AUCD)

Response to Snopes Piece Regarding Brett Kavanaugh and Disability, Association of University Centers on Disabilities (AUCD)

Disability Groups Line Up Against Trump Supreme Court Pick, Disability Scoop

WHAT THE NOMINATION OF JUDGE KAVANAUGH TO THE SUPREME COURT MEANS FOR PEOPLE WITH DISABILITIES, Center for Public Representation

Stop Brett Kavanaugh Fact Sheet: Disability Justice, People for the American Way

The American Association of People with Disabilities Opposes the Nomination of Judge Brett Kavanaugh to the US Supreme Court, AAPD

ASAN Opposes Supreme Court Nominee Brett Kavanaugh, Autistic Self Advocacy Network

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.

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

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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