Speaker Nancy Pelosi (l) and Elena Hung (r) embrace in front of the podium and an American flag. They are both dressed in white. The Speaker holds a brightly colored, framed drawing by Elena’s daughter Xiomara, given to the Speaker in appreciation of her work.

On December 14, 2022, a ceremony was held at the U.S. Capitol to honor Nancy Pelosi, who is the first woman Speaker of the U.S. House of Representatives, and who has twice been elected to that office. The occasion was the unveiling of her official portrait as Speaker, which will join the portraits of all her predecessors in Statuary Hall. 

Among the distinguished guests to offer their remarks and congratulations was our own Elena Hung, co-founder and executive director of Little Lobbyists. We here at Little Lobbyists wish to express our undying gratitude to Speaker Pelosi as a champion of our children and the access to health care all of us deserve. 

***

“Madame Speaker, members of Congress, distinguished guests, friends watching on the livestream: It is my great honor to join you today.

“When I reflect on Speaker Pelosi’s incomparable leadership, I think of the partnerships she so thoughtfully creates and nurtures – the inside maneuvering and the outside mobilization she has often spoken about: 

Partnerships between those who are most directly affected by the laws passed in this building and the members of Congress who draft and vote on them;

Partnerships between families like mine, who share our personal stories to put a face on policy, and the most powerful woman in the history of the United States Congress who chose to listen and uplift those stories;

Partnerships like these are how I, an immigrant mother of a disabled child, am here speaking before you now;

Partnerships like these are what makes it possible to pass and defend life-changing legislation like the Patient Protection and Affordable Care Act.

Elena Hung speaking during the ceremony. She is standing at a podium. Behind her are several marble and bronze statues of famous Americans, as well as three American flags. She is speaking to a large audience seated in chairs on the black and white tiled marble floor.

“It is no exaggeration to say that my daughter Xiomara, the joy of my life, and countless children with complex medical needs and disabilities like her, are alive today because of the ACA – and we have the ACA because of Speaker Pelosi.

“I often think of all the babies like Xiomara – whose five months in the Neonatal Intensive Care Unit totaled $3 million in medical bills – who now have a chance at childhood because the Affordable Care Act (ACA) banned lifetime limits on their care.

“Xiomara is 8 years old now – 8 birthdays that were never promised to a medically complex child like her. And as we await Xiomara’s next life-saving surgery, I am comforted knowing she has the health care she needs because of the protections of the ACA.

“Today, as we celebrate and express our gratitude for the Speaker’s remarkable accomplishments, what I hope will be most remembered as part of her legacy – and what I hope everyone sees when they look at this beautiful portrait – is that Speaker Pelosi did it all for the children. By working together in partnership – inside and outside – we are able to celebrate more birthdays with our children and build a better world that is worthy of them. 

“Madam Speaker, on behalf of Xiomara and all the Little Lobbyists children and their families, thank you.” 

***

You may watch the entire ceremony in this CSPAN video:

[video description: A play button hovers over a portrait of Speaker Pelosi, with the CSPAN logo in the lower left. Elena’s remarks begin at 29:37.]

Co-founder Elena Hung poses outside the U.S. Capitol [image description: A woman with black hair and a grey tweed coat holds three signs with the Little Lobbyists’ red, white & blue logo on them]

In 2017, Elena Hung and Michelle Morrison, parents of children with complex medical needs and disabilities (Xiomara and Timmy), were worried about the future of health care, given the frightening rumblings out of Washington DC. The two sat down at a kitchen table and put their heads together: How could they get their elected officials to understand how important programs and protections like the Affordable Care Act (ACA), Medicaid, the Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA) are for families who rely on specialized health care, inclusive education, and accessible public spaces?

A simple plan was formed: collect photos and stories of kids with complex medical needs and disabilities from around the country and take them directly to their legislators. Deliver them in person with their own kids (and their ventilators, oxygen, wheelchairs, walkers, leg braces, feeding tubes, and more in tow) so lawmakers could see first-hand who needs the protection of the very laws and programs under threat. 

Elena and Michelle gathered over 150 stories from other families across the nation to hand out to legislators. Their first visit to Capitol Hill was in June 2017. Five families from the DC metro area gathered for that first Hill visit. The group led by example: Here are our children, and they belong in their communities, they need quality health care and education, and they deserve to be heard by their legislators. 

Co-founders Michelle Morrison & Elena Hung pose with their families outside the Hart Senate Office Building [image description: Four adults and three children pose on the sidewalk in front of an office building sign. The building is made of white marble with large windows.]

The press quickly dubbed the family group, “the little lobbyists,” and the name stuck. Since 2017, Little Lobbyists has become a presence on Capitol Hill, providing an essential perspective on the ACA, Medicaid, Home and Community-Based Services, and many other issues. We have survived and thrived.

Little Lobbyists is now nearly 10K strong on Facebook, and followed by over 16K individuals and organizations on Twitter. Our work is reaching and empowering thousands of families every day. Through our state chapter groups and other outreach, we are also empowering and encouraging advocates at the state and local levels. 

The democratic process works. Little Lobbyists’ success is a testament to it. Through peaceful protests and rallies, through scheduled and impromptu meetings with our federal and state legislators, through Congressional testimony and press conferences, Little Lobbyists has, against the odds, helped secure the Affordable Care Act and Medicaid for children with complex medical needs and disabilities throughout the United States. We have a voice. Democracy works when we use our voices constructively and peacefully to create change.

In these troubled days of 2022, we stand with our allies to protect the bodily autonomy, self-determination, and well-being of everyone, and, particularly, women, people of color, LGBTQ+ individuals, and people with complex medical needs and disabilities.

The June 2022 U.S. Supreme Court decision to overturn Roe v. Wade dramatically limits the Fourteenth Amendment’s civil right to make personal decisions without government interference and upends previous rulings on personal rights including marriage, intimacy, sterilization, medical care, housing, speech, and more. People with disabilities have historically been denied the right to make these fundamental decisions about their own lives, and many are still contested.

Our goal is for the United States to become a place where our government champions policies and laws that protect the civil rights and the future of our children. We are working together to map a path to better health care, education, and community inclusion for every person with complex medical needs and disabilities.

Join us! Our voice is your voice, and your voice is ours.

Some of the Little Lobbyists in 2017 [image description: A group of 8 children, some standing and some in medical strollers pose on a large plaza with the U.S. Capitol building in the distance.]

[Gallery description: Photos of Little Lobbyists families as they spoke at rallies & press conferences, met with congresspersons, and participated in state-level events. Photos were taken inside & outside the U.S. Capitol, inside & outside congressional office buildings, at the U.S. Supreme Court, at special events, and at other locations. Individual photo descriptions appear using the cursor hover feature.]

A young boy holds up a Little Lobbyist sign at a rally on Capitol Hill.

A Little Lobbyists family poses in front of the U.S. Capitol, accompanied by a dog and a drum set.

Two toddler girls pretend to talk on toy phones. A graphic reminds Little Lobbyist supporters to call their members of Congress to protect health care.

A U.S. Senator hugs a young girl wearing a Kamala Harris t-shirt.

The Speaker of the House stands at a podium while a Little Lobbyists founder looks on.

A group of Little Lobbyists families pose in front of the U.S. Capitol after meetings with representatives.

The Senate Minority Leader hands out candy during a Little Lobbyists’ trick or treat day on Capitol Hill.

Little Lobbyists families sit around a table in a congressional office while telling their health care stories to a congressman.

Little Lobbyists members pose with a U.S. Senator after a press conference, with U.S. flags in the background.

An LL mom and her son speak to a U.S. Senator.

A montage of photos of Little Lobbyists families meeting with U.S. representatives is positioned next to LL graphics about supporting health care.

Little Lobbyists families pose on a playground after meeting with their representative.

A Little Lobbyists mom poses with a U.S. Senator.

Little Lobbyists children engage with their congressional representative at a local playground.

A Little Lobbyists mom and her daughter pose with the Speaker of the House of Representatives.

A young boy poses with a U.S. Senator in a meeting room in the Senate.

Two young men who are wheelchair users pose in a hallway of the U.S. Capitol after representing Little Lobbyists at a Senate press conference.

A young boy poses on a tree-lined street near the U.S. Capitol, with the Capitol dome in the background.

A montage of photos of members of Congress reading to Little Lobbyists families during a story-time meeting.

A mom holding a young boy in her arms speaks to a well-known member of the U.S. House of Representatives on a brick-covered city street in Washington, D.C.

A mom and her daughter are positioned next to an LL graphic describing the need for Medicaid.

A young man wearing a Little Lobbyists t-shirt sits in his wheelchair, posing with his dog in front of the U.S. Supreme Court.

A mom wearing a “Health Care Voter” t-shirt poses in front of the U.S. Capitol while hugging her children.

Little Lobbyists families pose in the halls of a House office building with a representative.

A Little Lobbyists family poses with their congressional representative.

Children and parents are seated around a large wooden conference table in a congressional office.

Two young girls are seated at a conference table in front of a marble fireplace. One shakes hands with her Senator.

A group of Little Lobbyists families pose with a U.S. Senator after a meeting on health care.

A montage of photos of Little Lobbyists families speaking out about health care in Congress.

With the U.S. Capitol in the background, a group of speakers stands on a platform at a podium, delivering remarks on health care.

Several Little Lobbyists families pose outside the U.S. Hart Senate Office building, next to its sign.

A founder of Little Lobbyists delivers remarks from a podium in the Capitol building. Flags are in the background.

Little Lobbyists families pose during a press conference, sitting by decorative doors to the room.

A toddler girl in a disability stroller greets a U.S. Senator.

A young girl sits in her wheelchair and makes a phone call while her brother stands next to her. They are in a hall in a congressional office building.

A group of Little Lobbyists families pose in front of the U.S. Capitol building.

A group of Little Lobbyists families, wearing brightly colored LL t-shirts are photographed at a presidential candidate’s campaign rally.

A large group of Little Lobbyists poses with a member of. Congress in front of curtains.

Little Lobbyists pose in front of the office of a U.S. Senator.

Several women pose in front of decorative curtains after making remarks about health care.

Little Lobbyists pose in front of the U.S. Capitol.

Two members of Little Lobbyists speak at a podium in the U.S. Capitol at the launch of a disability rights bill.

Little Lobbyists pose with a new member of the House of Representatives.

A family shakes the hand of a senior member of the U.S. Senate.

A mom poses with her child (who uses a disability stroller) in front of an ambulance during a health care public service campaign.

Several young children are seated at a long legislative dais, flanked by flags.

Little Lobbyists speaking at a rally.

In a black and white photograph, several Little Lobbyists moms pose in front of the U.S. Capitol, during the early days of the efforts to save the Affordable Care Act.

Little Lobbyists hold an impromptu meeting with a member of Congress in a marble-lined hallway.

Members of Little Lobbyists pose for a photo in a beautifully decorated, red-accented room in the U.S. Capitol.

A founder of Little Lobbyists holds multiple LL signs with the LL logo in front of the U.S. Capitol on a beautiful autumn day.

A founder of Little Lobbyists poses with her daughter. Both wear navy blue t-shirts with the LL logo.

A group of Little Lobbyists families in Tennessee pose in a conference room. They wear brightly colored t-shirts with the LL logo.

A mom and her son pose for a photo after a U.S. Senate press conference. The podium and U.S. flags are in the background.

A mom and her daughter pose after a press conference in the U.S. Capitol.

A new member of Congress wearing a vivid turquoise suit bends forward to grasp the hand of a Little Lobbyists child who reaches out to shake her hand.

Little Lobbyists pose in front of the name plaque of a U.S. congressional office.

A young boy is photographed in the hallway of the Capitol.

Little Lobbyists families pose with their legislators after a meeting in California.

A founder of Little Lobbyists holds up a photo of a child who has recently died, while explaining that our families need health care.

A large group of Little Lobbyists pose in Halloween costumes in a hallway of the Hart Senate Office Building during Halloween on the Hill.

A Little Lobbyists mom holds her daughter while posing with the Speaker of the House.

Little Lobbyists share their story in the Senate offices.

A child wearing a Little Lobbyists t-shirt poses with her state legislative rep.

A child receives a handshake from a new member of Congress.

Little Lobbyists family poses with their U.S. representative in a hallway in Congress.

A young girl whose wheelchair has been turned into a beautiful jellyfish Halloween costume poses with her parents and a member of Congress.

A new member of Congress signs an autograph for a Little Lobbyists teenager.

Little Lobbyists at a press conference.

Two young boys smile while riding the Senate train underneath the U.S. Capitol.

A group of Little Lobbyists in Halloween costumes speak in a hallway of a congressional office building with a legislator.

A father and son dressed as superheroes accept a Halloween treat from a member of Congress.

A young woman representing Little Lobbyists speaks at a podium marked with a “Lower Drug Prices” sign outside in front of the U.S. Capitol.

Little Lobbyists visiting a Senate office.

A young boy wearing a superhero costume speaks with a member of Congress in a hallway in one of the congressional office buildings.

A mom holds a young girl who gives a legislator a high-five.

Little Lobbyists kids pile around a large conference table during a Halloween on the Hill day.

Little Lobbyists at a night time rally in front of the Capitol.

A young boy sits on a patterned carpet with state flags after a state legislative press conference.

Senator at the table with Little Lobbyists.

Congressman kneels to meet a Little Lobbyists child.

Little Lobbyists teen speakers before a rally.

Two young boys play near a podium with a legislative seal. American flags are in the background.

Little Lobbyists on a holiday visit in a Senate office.

Several members of Little Lobbyists, wearing colorful LL t-shirts, pose in front of the U.S. Supreme Court, lit from within in the early evening.

Large group of Little Lobbyists families with the family of a congressperson.

A Congressman listens to Little Lobbyists teens.

Little Lobbyists members speak at a press conference inside the Capitol.

A Senator high fives a Little Lobbyists teen after his speech.

Little Lobbyists on the steps of the Capitol at a rally with members of the Senate.

A young boy sitting in a wheelchair and his sibling stand in front of a congressional office door.

Little Lobbyists family poses with a U.S. Senator. An American flag stands to one side.

Member of Congress at a local playground with Little Lobbyists families.

Little Lobbyists families sit and stand along a carpeted hallway in a congressional office building.

A mom holds her young son while they smile for the camera with a new member of Congress.

A Little Lobbyists family poses with the Speaker of the House in a wood-paneled meeting room.

In a marble-lined hallway of a congressional office building, a dad and his kids pose with a U.S. Senator.

Standing before decorative doors in a congressional meeting room, a mom with a stunning tattoo on her arm holds her young daughter while posing with a U.S. Senator.

The then-U.S. Senate Minority Leader distributes Halloween candy to a group of children in his office.

A young girl who is a wheelchair user poses with a U.S. Senator who is also a wheelchair user.

Two children dressed in Halloween costumes wait for a U.S. congressman to sign his autograph.

A Little Lobbyists family poses with a U.S. Senator.

Two Little Lobbyists moms pose with a new member of Congress in a white-brick lined hallway.

Little Lobbyists families and members of the House and Senate standing together on the Capitol lawn on a beautiful, sunny, summer morning.

Jeneva Stone, Jamie Davis Smith, Elena Hung and Rob Stone [image description: Three women with light skin wearing dresses and one light-skinned man seated in his wheelchair pose on a beige pebbled sidewalk with the U.S. Capitol, flanked by green trees, in the background. Two of the women hold photo posters of their children, who are wearing Little Lobbyists t-shirts.]

On May 5, 2022, Little Lobbyists were part of a Home and Community-Based Services (HCBS) rally on the National Mall along with the Service Employees International Union (SEIU) to urge Congress to pass the Better Care Better Jobs Act (BCBJA). The BCBJA would provide badly needed funds to HCBS programs, reduce or eliminate waiting lists, enable states to raise wages for home care workers, and provide funds for better training. The BCBJA would create 500,000 new jobs and allow 1.1 million family caregivers to return to work. There are currently over 800,000 Americans on waiting lists for HCBS programs.

The Care Is Essential Day of Action on Capitol Hill featured many speakers with disabilities. Representative Debbie Dingell (D-MI) and Senator Bob Casey (D-PA), champions of the BCBJA in the House and Senate, gave speeches on the importance of home care. The full video can be viewed on the SEIU Facebook page.

Little Lobbyists members Jamie Davis Smith (mother of Claire) and Rob Stone delivered remarks at the event. Jamie gave hers by voice, and Rob used his eye-controlled assistive communication device to speak his. A transcript is below, along with a video clip of the event.

Rob Stone:

Home and Community-Based Services give me control of my own life. I can live where I want. My home care staff help me do the things I want to do. Like go to art classes and run my own art website.

I also take music classes. I play Challenger Baseball. And I’m an advocate with Little Lobbyists and The Arc of Maryland.

President Biden wants more money for HCBS so I can pay my employees a higher wage. And hire more staff. President Biden wants to end waiting lists.

I’m mad at Republicans because not one of them will help Joe Biden help people like me so we can live at home with dignity and independence. Home care now!

Jamie Davis Smith:

My name is Jamie Davis Smith. I wear a lot of hats as an attorney, writer and advocate but my most important job is to be a Mom to my four children.

One of my children, Claire, is 15. She loves being near water, amusement park rides, watching movies and eating an entire container of ice cream in one sitting. She has friends at school and loves going to parks with her siblings.

She loves doing all the things kids her age enjoy. But because she has complex medical needs and multiple disabilities she needs some help to do them. When Claire was younger, she did not have access to home and community-based supports and I had to give up not just my job, but my entire career to care for her.

Because Claire did, eventually, get access to home and community-based supports, she has been able to grow up where she belongs – at home with her family. She has been able to do things that would have been unimaginable without these supports, simple things like going to summer camp and playing at our neighborhood playground.

It wasn’t all that long ago that kids like Claire were forced to live in institutions, hospitals and even nursing homes. That’s inhumane.

Jeneva and Rob Stone [image description: A mother and son with light skin pose on a grassy area between two giant paintings. The mother is standing, the son is seated in his wheelchair. The painting on the left is a pair of hands in blue with the words "Care Is Essential" between them, with a round pink and gold background. There's a yellow flower to the right. The other, to the right, has a gold background with a red starburst in the middle. At the lower edge of the starburst are three fisted hands, raised. Around the starburst are the following words, in blue: Protect Us, Respect Us, Pay Us.]

Today I’m joining home care workers, seniors, and families across the country to urge Congress to pass the Better Care Better Jobs Act, which would provide badly needed funding for home and community-based services, raise home care wages, and create better jobs. It would also allow 1.1 million family caregivers to return to work. Currently, over 800,000 Americans are on state waiting lists due to lack of funding for Home and Community-Based Services.

Claire is just one of 61 million disabled Americans. We are speaking with one voice to say: Care can’t wait. We need action and we need it now.

Since Claire was born, all of my major decisions have been made with the singular goal of ensuring that she retains her access to home and community-based services. We have given up jobs and have had to live far away from family in order to keep Claire’s supports in place. We recently looked into moving again to access school programs for Claire’s siblings and to be closer to my parents, who are not well and require a lot of support as well.

What I discovered was that, if we moved to another state, Claire would be stuck on the bottom of a waitlist for at least seven years. This prospect was terrifying. If my family had to pay for the services Claire currently receives, it would cost us almost what we bring home every month.

I know of no other group of people in this country who have to endure a years’ long wait if they want to take a job or live closer to family or just want an adventure. We must invest in home care fully, and we must do it now.

And even though Claire has HCBS now, the shortage of home health care workers always looms over us. Claire’s home care workers are caring, hard working women. They want the best for her. But they work for low wages and do not get paid time off if they are sick or need vacations. Some lack reliable care for their own children. Some home health care workers stack multiple jobs together, working seven days a week, fifteen or more hours a day, just to make ends meet.  

Low wages make it hard to retain wonderful home care workers and makes it almost impossible to attract new caregivers. It means that disabled people lack the stability they need to thrive in their communities.

Anyone who says they support American families needs to take action, and they need to do it now. We need a big investment in home care.

Many of our leaders in Washington have heard us. They listen and they understand. But not one Republican, not a single one, will commit to take action towards ensuring that people with disabilities, like Claire, can access the care they need.

[image description: Two men and two women stand on a temporary stage with the U.S. Capitol in the background. A man seated in his wheelchair is looking at an AAC communication device, which is mounted on a pole connected to his wheelchair. One of the women holds a microphone near the communicator’s speaker. The other two persons stand behind them. To the left of the stage is an ASL interpreter wearing black clothes. She has light skin. To the right of the stage is a woman wearing a rainbow striped dress who has dark skin.]

---

 Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate.

Rob Stone is a health care and disability rights advocate who lives in Bethesda, Maryland. He is also an artist.

As President Elect Biden stated, January 6, 2021 is a day that will go down in infamy. The attempted insurrection by Trump supporters shows us how fragile our democracy can be, and remind us that the strength of our democracy resides within each of us.

The democratic process works. Little Lobbyists’ success is a testament to it. Through peaceful protests and rallies, through scheduled and impromptu meetings with our federal and state legislators, through Congressional testimony and press conferences, Little Lobbyists has, against the odds, helped secure the Affordable Care Act and Medicaid for children with complex medical needs and disabilities throughout the United States. We have a voice. Democracy works when we use our voices constructively, legally, and peacefully to create change.

Seeing images of members of Congress with whom we have met being threatened and the defilement of the U.S. Capitol Building, the symbol and structure of our democratic process, is extremely disturbing. We stand with our state and federal legislators, who have stood by us as we advocate for our children with complex medical needs and disabilities and who are devoted to the protection of our democracy.

Here are photos of Little Lobbyists participating in the work and joy of our American democratic process over the last three years. Join us!

[Gallery description: Photos of Little Lobbyists families over the last few years as they speak at rallies & press conferences, meet with congresspersons, and participate in state-level events. Photos were taken inside & outside the U.S. Capitol, inside & outside congressional office buildings, at the U.S. Supreme Court, at special events, and at other locations. Individual photo descriptions appear using the cursor hover feature.]

A young boy holds up a Little Lobbyist sign at a rally on Capitol Hill.

A Little Lobbyists family poses in front of the U.S. Capitol, accompanied by a dog and a drum set.

Two toddler girls pretend to talk on toy phones. A graphic reminds Little Lobbyist supporters to call their members of Congress to protect health care.

A U.S. Senator hugs a young girl wearing a Kamala Harris t-shirt.

The Speaker of the House stands at a podium while a Little Lobbyists founder looks on.

A group of Little Lobbyists families pose in front of the U.S. Capitol after meetings with representatives.

The Senate Minority Leader hands out candy during a Little Lobbyists’ trick or treat day on Capitol Hill.

Little Lobbyists families sit around a table in a congressional office while telling their health care stories to a congressman.

Little Lobbyists members pose with a U.S. Senator after a press conference, with U.S. flags in the background.

An LL mom and her son speak to a U.S. Senator.

A montage of photos of Little Lobbyists families meeting with U.S. representatives is positioned next to LL graphics about supporting health care.

Little Lobbyists families pose on a playground after meeting with their representative.

A Little Lobbyists mom poses with a U.S. Senator.

Little Lobbyists children engage with their congressional representative at a local playground.

A Little Lobbyists mom and her daughter pose with the Speaker of the House of Representatives.

A young boy poses with a U.S. Senator in a meeting room in the Senate.

Two young men who are wheelchair users pose in a hallway of the U.S. Capitol after representing Little Lobbyists at a Senate press conference.

A young boy poses on a tree-lined street near the U.S. Capitol, with the Capitol dome in the background.

A montage of photos of members of Congress reading to Little Lobbyists families during a story-time meeting.

A mom holding a young boy in her arms speaks to a well-known member of the U.S. House of Representatives on a brick-covered city street in Washington, D.C.

A mom and her daughter are positioned next to an LL graphic describing the need for Medicaid.

A young man wearing a Little Lobbyists t-shirt sits in his wheelchair, posing with his dog in front of the U.S. Supreme Court.

A mom wearing a “Health Care Voter” t-shirt poses in front of the U.S. Capitol while hugging her children.

Little Lobbyists families pose in the halls of a House office building with a representative.

A Little Lobbyists family poses with their congressional representative.

Children and parents are seated around a large wooden conference table in a congressional office.

Two young girls are seated at a conference table in front of a marble fireplace. One shakes hands with her Senator.

A group of Little Lobbyists families pose with a U.S. Senator after a meeting on health care.

A montage of photos of Little Lobbyists families speaking out about health care in Congress.

With the U.S. Capitol in the background, a group of speakers stands on a platform at a podium, delivering remarks on health care.

Several Little Lobbyists families pose outside the U.S. Hart Senate Office building, next to its sign.

A founder of Little Lobbyists delivers remarks from a podium in the Capitol building. Flags are in the background.

Little Lobbyists families pose during a press conference, sitting by decorative doors to the room.

A toddler girl in a disability stroller greets a U.S. Senator.

A young girl sits in her wheelchair and makes a phone call while her brother stands next to her. They are in a hall in a congressional office building.

A group of Little Lobbyists families pose in front of the U.S. Capitol building.

A group of Little Lobbyists families, wearing brightly colored LL t-shirts are photographed at a presidential candidate’s campaign rally.

A large group of Little Lobbyists poses with a member of. Congress in front of curtains.

Little Lobbyists pose in front of the office of a U.S. Senator.

Several women pose in front of decorative curtains after making remarks about health care.

Little Lobbyists pose in front of the U.S. Capitol.

Two members of Little Lobbyists speak at a podium in the U.S. Capitol at the launch of a disability rights bill.

Little Lobbyists pose with a new member of the House of Representatives.

A family shakes the hand of a senior member of the U.S. Senate.

A mom poses with her child (who uses a disability stroller) in front of an ambulance during a health care public service campaign.

Several young children are seated at a long legislative dais, flanked by flags.

Little Lobbyists speaking at a rally.

In a black and white photograph, several Little Lobbyists moms pose in front of the U.S. Capitol, during the early days of the efforts to save the Affordable Care Act.

Little Lobbyists hold an impromptu meeting with a member of Congress in a marble-lined hallway.

Members of Little Lobbyists pose for a photo in a beautifully decorated, red-accented room in the U.S. Capitol.

A founder of Little Lobbyists holds multiple LL signs with the LL logo in front of the U.S. Capitol on a beautiful autumn day.

A founder of Little Lobbyists poses with her daughter. Both wear navy blue t-shirts with the LL logo.

A group of Little Lobbyists families in Tennessee pose in a conference room. They wear brightly colored t-shirts with the LL logo.

A mom and her son pose for a photo after a U.S. Senate press conference. The podium and U.S. flags are in the background.

A mom and her daughter pose after a press conference in the U.S. Capitol.

A new member of Congress wearing a vivid turquoise suit bends forward to grasp the hand of a Little Lobbyists child who reaches out to shake her hand.

Little Lobbyists pose in front of the name plaque of a U.S. congressional office.

A young boy is photographed in the hallway of the Capitol.

Little Lobbyists families pose with their legislators after a meeting in California.

A founder of Little Lobbyists holds up a photo of a child who has recently died, while explaining that our families need health care.

A large group of Little Lobbyists pose in Halloween costumes in a hallway of the Hart Senate Office Building during Halloween on the Hill.

A Little Lobbyists mom holds her daughter while posing with the Speaker of the House.

Little Lobbyists share their story in the Senate offices.

A child wearing a Little Lobbyists t-shirt poses with her state legislative rep.

A child receives a handshake from a new member of Congress.

Little Lobbyists family poses with their U.S. representative in a hallway in Congress.

A young girl whose wheelchair has been turned into a beautiful jellyfish Halloween costume poses with her parents and a member of Congress.

A new member of Congress signs an autograph for a Little Lobbyists teenager.

Little Lobbyists at a press conference.

Two young boys smile while riding the Senate train underneath the U.S. Capitol.

A group of Little Lobbyists in Halloween costumes speak in a hallway of a congressional office building with a legislator.

A father and son dressed as superheroes accept a Halloween treat from a member of Congress.

A young woman representing Little Lobbyists speaks at a podium marked with a “Lower Drug Prices” sign outside in front of the U.S. Capitol.

Little Lobbyists visiting a Senate office.

A young boy wearing a superhero costume speaks with a member of Congress in a hallway in one of the congressional office buildings.

A mom holds a young girl who gives a legislator a high-five.

Little Lobbyists kids pile around a large conference table during a Halloween on the Hill day.

Little Lobbyists at a night time rally in front of the Capitol.

A young boy sits on a patterned carpet with state flags after a state legislative press conference.

Senator at the table with Little Lobbyists.

Congressman kneels to meet a Little Lobbyists child.

Little Lobbyists teen speakers before a rally.

Two young boys play near a podium with a legislative seal. American flags are in the background.

Little Lobbyists on a holiday visit in a Senate office.

Several members of Little Lobbyists, wearing colorful LL t-shirts, pose in front of the U.S. Supreme Court, lit from within in the early evening.

Large group of Little Lobbyists families with the family of a congressperson.

A Congressman listens to Little Lobbyists teens.

Little Lobbyists members speak at a press conference inside the Capitol.

A Senator high fives a Little Lobbyists teen after his speech.

Little Lobbyists on the steps of the Capitol at a rally with members of the Senate.

A young boy sitting in a wheelchair and his sibling stand in front of a congressional office door.

Little Lobbyists family poses with a U.S. Senator. An American flag stands to one side.

Member of Congress at a local playground with Little Lobbyists families.

Little Lobbyists families sit and stand along a carpeted hallway in a congressional office building.

A mom holds her young son while they smile for the camera with a new member of Congress.

A Little Lobbyists family poses with the Speaker of the House in a wood-paneled meeting room.

In a marble-lined hallway of a congressional office building, a dad and his kids pose with a U.S. Senator.

Standing before decorative doors in a congressional meeting room, a mom with a stunning tattoo on her arm holds her young daughter while posing with a U.S. Senator.

The then-U.S. Senate Minority Leader distributes Halloween candy to a group of children in his office.

A young girl who is a wheelchair user poses with a U.S. Senator who is also a wheelchair user.

Two children dressed in Halloween costumes wait for a U.S. congressman to sign his autograph.

A Little Lobbyists family poses with a U.S. Senator.

Two Little Lobbyists moms pose with a new member of Congress in a white-brick lined hallway.

Little Lobbyists families and members of the House and Senate standing together on the Capitol lawn on a beautiful, sunny, summer morning.

Last week Little Lobbyists joined Senator Van Hollen, Representatives Schkowsky, DeLauro and Doggett, Moms Rising and Lower Drug Prices Now for a press conference on Capitol Hill to demand that any vaccine or treatment developed for the novel coronavirus be affordable and accessible to ALL Americans. Little Lobbyists Yasmin Canales spoke on our behalf, her speech is below:

My name is Yasmin Canales and I am member of Little Lobbyists, an organization who advocates for kids with complex medical needs and disabilities. I am a high school senior, just accepted into my top 2 choices for college. I love swimming, work as a lifeguard, and am a youth group leader with a passion for sharing my faith. I was also born with a genetic disease called Cystic Fibrosis, which affects all my organs, but especially my respiratory and digestive systems. Since birth, I have had over 30 hospitalizations for weeks at a time as well as 15 surgeries. I take 21 different medications, including over 35 pills daily, and 2-4 hours of intense respiratory therapies. 

The medicines I need to stay alive cost over $23,000 for one month. Many of these drugs are so expensive because the companies that make them have a monopoly, allowing them to set prices as high as they want. It is extremely frustrating to know our public tax dollars fund much of the research for these medicines, but we can’t afford them because private pharmaceutical corporations are allowed to inflate prices to pad their profits. 

Regarding the outbreak of the novel coronavirus, COVID-19, the administration has said they won't promise a vaccine will be available or affordable for everyone, because pharmaceutical companies need to make money. But 27 million Americans are uninsured, 34 million working people have no paid sick days, and we are in contact with one another every day. Affordable, equal access to ALL for any treatment or vaccine for the novel coronavirus is of the utmost importance to me. My compromised immune system and my lowered lung function will not be able to fight off this novel virus, and I might die if access is denied to myself or those around me. When the virus spreads into my community, my life and the lives of people like myself and many other children with complex medical needs, is on the line.

The availability of a future vaccine or treatment for this global pandemic should not be in question. There is currently a provision in the Affordable Care Act mandating all federally recommended vaccines be provided at no cost. Public taxpayer funds have already gone into coronavirus research - we’ve already paid for it and we should be guaranteed affordable access. 

There are things more important than profits, like our health. I want to thank Senator Van Hollen and Representatives Schkowsky and Doggett for holding the Administration accountable by saying no monopoly for coronavirus drugs. The safety of every American, of every person we love, in the face of this global pandemic should be everyone's top priority - especially our government's.

Last week, Little Lobbyists families were invited to participate in a Senate press conference opposing President Trump’s proposed budget cuts to Medicaid. Following Senators Schumer, Murray, Stabenow, and Wyden, Little Lobbyists member Cristina Perez Edmunds (with her son Oscar by her side) delivered an unforgettable reminder of the power of Medicaid: 

My name is Cristina Perez Edmunds, and it is an honor to speak here today. I am a proud first generation American daughter of a Cuban refugee, and proud mother to my beautiful son, Oscar. Oscar is a strong, happy, beautiful boy, with big brown eyes. He’s about to turn four. He loves books and bath time and has amazing hair. Oscar was born with an extremely rare chromosomal deletion — there is only one other person in the world with the exact same missing genetic material. Because of this diagnosis, Oscar lives with stage three kidney disease, heart disease, and brain differences which have required endless testing, appointments, and even surgeries. He requires a feeding tube for nutrition, as he has trouble swallowing, and is a wheelchair user — although he works extremely hard to gain mobility skills in his many therapy appointments. 

Oscar was born prematurely, and his father and I thought he just needed some time to catch up. Unfortunately, it became clear that we had a much longer road ahead of us than we had anticipated. As parents, our ultimate goal is to raise a son who is independent, and any milestone toward that is cause for huge celebration. 

I want you to think of your own children, asleep at night in their cribs or beds. Perhaps the temperature has dropped in the house, and their blanket has made its way to the other side of the bed. I’d imagine your child might wake up, grab their blanket, get themselves cozy, and fall back asleep. Or perhaps, they’d walk to your room, and say, “Mommy, Daddy, I’m cold, can you come tuck me in?” This is a privilege that many of us parents of medically complex children do not take for granted. 

My child does not speak and does not have independent mobility. He cannot walk to our room in the middle of the night to tell us if he’s cold, or uncomfortable, or having a bad dream. It has taken four years of intensive therapies to get to where we are now. It was a year before Oskie could sit on his own, two years before he could say “momma” and “dada,” three years before he figured out how to move forward in his walker, and, this year, he learned how to scoot forward. 

The opportunity to learn these things comes at a hefty price. An initial consultation for therapy is $500. That’s just for someone to watch him for an hour and discern what he needs from therapy. Each session after that costs about $150 two to three times per week, all year round. The wheelchair he uses costs $6,000, and the gait trainer he has at home is another $4,000. The gait trainer, until a few weeks ago, has been his ONLY mode of independent mobility. Add to that the cost of his formula, which must be administered via g-tube. Just to meet Oscar’s basic needs to eat and to learn how to move, our family is staring at a bill of approximately $30k per year. This total does not include doctor appointments, diapers, ER visits, and the surgeries that lie ahead.  

Thirty thousand dollars per year is someone’s salary. For many families like us, Medicaid is literally a lifesaver. Children like mine require full time caregiving — and may require that for the rest of their lives. This usually means one parent has to quit working, like I did, to care for their child full-time. Without Medicaid, families would have to choose between giving their child the opportunity for mobility or making rent; teaching their child how to speak, or fixing the roof; teaching their child how to eat, or fixing their car. 

Simply put, without Medicaid, families like ours would be bankrupt.

The other night, when we put Oscar to bed, he grabbed his blanket, pulled it over himself, rolled over, and fell asleep. He is able to do that, in a comfortable home, in a comfortable bed, because of Medicaid. 

Yesterday, President Trump released his new budget, including detrimental cuts to Medicaid. This will, without a doubt, reduce, or even eliminate, accessibility to the life-saving benefits that medically complex children, like mine, rely on to survive and thrive.

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Cristina Perez is a New Orleans-based singer and mother to three-year-old Oscar, her medically complex and disabled son. She is focused on using her original music to bring light, love, and awareness to her community and to give a louder voice to mothers of children with disabilities and rare diseases. Her latest single, “Lessons I’ve Learned” was released last year as an uplifting anthem for mothers to turn to when things get rough. Cristina also authors the blog “It’s Not Too Complicated,” where she breaks down the trials and tribulations of motherhood, marriage, and everyday life with a medically complex child.

Our Little Lobbyists families began their whirlwind day in the Capitol by attending a press conferences held by their hosts with other guests for the 2020 State of the Union Address.

Last week four of our Little Lobbyists families were honored to attend the State of the Union, representing all of our families of kids with complex medical needs and disabilities. We asked them to share their experience with us. 

Rep. Wexton with Aire and Walewska in front of the Capitol.

Walewska Watkins and her son Little Lobbyists Aire were guests of Representative Jennifer Wexton (VA-10): 

I’ll remember Rep. Wexton’s gentle voice as she took my son Aire by the hand into the Capitol, Rep. Dingell’s sincere pain at hearing terminal patient’s stories, Sen. Stabenow’s sweet joy when speaking about her granddaughter’s fight against congenital heart disease, and, of course, Aire’s little boy pride at standing up for health care (“Because it’s health care, not health careless.”) I’ll treasure the LatinX community’s delight at hearing my Congresswoman speak Spanish and my voice advocating for the protection of our children with preexisting medical conditions and disabilities.

Sitting with the main act beneath me, I couldn’t help but notice the state and territorial shields that decorate the ceiling of the House Chamber. As a Puerto Rican islander, I was delighted by the irony that our territorial shield stood high above him—a silent remainder of the thousands who unnecessarily fell ill, died, or were displaced after Hurricane María and who will forever hang over his head.

I have no doubt that the main act doesn’t believe his own words and believes they can distract or destroy us. He believes this, because he thinks the State of the Union is just a speech he gives. If he really wanted to defeat us, he should have cancelled the show so we couldn’t spend the day connecting with patients, families, and activists from around the nation. If he wanted to win, he shouldn’t have given us the chance to learn about each other’s initiatives, strategies, and success. The State of the Union is what it is, but the State of our activism is United.

Andrea her daughter Louisa and her husband Tom with Senator Stabenow.

Andrea Pietrowsky, mom of Little Lobbyists Louisa, was the guest of Senator Debbie Stabenow (MI):

Tuesday evening was certainly unforgettable. It was an honor to attend as a guest of Senator Stabenow, and represent not only my daughter’s personal health care story but stand for the rights of children with complex medical needs and disabilities everywhere. 

As a guest I was obligated to follow the formalities of Congress, and the rules on the back of my ticket—which interestingly indicated to remain seated and not to applaud. My inner dialogue said, “Yes, I can do this”.  Seated in the gallery between two friendly and conversational individuals, I quickly learned they too both had personal preexisting stories of their own. 

I was eager to hear how President Trump would explain his commitment to protect Americans with pre-existing conditions when in fact everything he has done since taking office was aimed at decimating the Affordable Care Act and taking away those very protections. However, his words were hollow and contradictory. He specifically said, “A good life for American families also requires the most affordable, innovative, and high-quality health care system on Earth.” But where on Earth would we find this without legal protections from discriminatory health insurance practices? 

He spoke of an executive order he signed that would call for medical transparency of costs, but that’s not even useful without coverage of all pre-existing conditions. How could one search for a “bargain” on something as costly as open heart surgery and inpatient recovery? Or the complex birth of a premature baby? Or go comparison shopping for unplanned emergencies? 

The topic of prescription drug costs was no better, actually much worse. We all heard his disingenuous call to action, “Get a [bipartisan prescription drug pricing] bill on my desk, and I will sign it into law immediately.” But we know that Republican Senator McConnell has been sitting on H.R.3 - The Elijah E. Cummings Lower Drug Costs Now Act for several months.

Another disappointing moment was the abandonment of a commitment to maintaining and improving public education, which is essential for all children, including children with disabilities. Our president referred to public education twice by calling it “government education” purposely creating a negative connotation to sell it as some sort of form of socialism. 

It was sinking feeling to step away from a once-in-a-lifetime opportunity questioning if a single truth was told among so many blatant lies.

Leslie with her son Jonathan and Senator Schumer

Leslie G. and Little Lobbyists Jonathan were the guests of Senate Minority Leader Chuck Schumer (NY)

“The day was an exciting whirlwind of activity! Members of Senator Schumer's staff really went out of their way to accommodate us and ensure we had a special day. Everyone was gracious, incredibly helpful and attentive. It felt surreal to be in Senator Schumer’s office, he even personally wrote a note to excuse Jonathan from school for the day! It was an exciting experience we will remember for a long time! Jonathan was so keyed up, even though he was tired, it took him until almost midnight to get to sleep.” Comments taken from dictation.

Elena and Xiomara with Speaker Pelosi

Elena Hung and Little Lobbyists Xiomara were the guests of Speaker Nancy Pelosi:

It started with me picking up Xiomara from school and taking the train down to DC as we always do. We have done this trip so often and yet, no matter how many times we walk out of Union Station, the moment I see the Capitol for the first time still takes my breath away. Every single time. It might be my immigrant roots or my stubborn optimism, but the sight of the dome will always be a special treat for me.

I appreciated the opportunity to attend the State of the Union, to be in that room and experience history taking place. But I heard the same lies you heard, and I saw the same Republican members you saw chant "four more years!" without any regard for how their policies are harming and killing our loved ones. 

It was disgusting. I sat through all of that, arms folded across my chest, shaking my head. I may or may not have forcefully called out "that's not true!" several times. I did not stand for the president as he entered and left the chamber. I did not clap as he boasted about his cruelty. Instead, I said a quick prayer for all those who have been terrorized because of him.

But this shameful spectacle does not define my evening.

Immediately before the SOTU, Speaker Pelosi hosted a dinner reception for House Democratic members and their guests. I ran into so many members and so many staffers I have worked with. Many of them have watched Xiomara grow up over the years. Xiomara recognized them too.

Throughout the reception, I also got to meet other invited guests. A majority of them were health care advocates doing amazing work. Being in a space like this filled with some of the most powerful and generous people in the country can be incredibly intimidating and stressful, but instead, it felt like a reunion with chosen family who really, really love my kid. 

I had shared Xiomara's accessibility needs ahead of time, and we had a team that was assigned to us to ensure our comfort. I felt so supported in every way knowing Xiomara was being included with so much thoughtful planning. And that was really special.

As I headed back home that night, I was left with this: in these dark times, there are still lots and lots of good people doing good work. There are lots of people who care a lot, and they are not giving up. Neither should we.

Elena and Xiomara on the Speaker’s balcony in front of a spectacular view of Washington D.C. at night.

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

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

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

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

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

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

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

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

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

Louisa helping her family with yard work.

My name is Tasha Nelson and I want to talk to you about my amazing son Jack.

Jack is a spirited, funny and imaginative 8 year old. He has a passion for Marshmello, video games, extreme weather and the Titanic. He sings in our local children's choir, is on our neighborhood swim team, and enjoys being  a cub scout. He is a little boy who loves music and science. If you ask him what he wants to be when he grows up, hell tell you “a DJ like Marhsmello that is also a doctor who cures cancer”. 

My little DJ-Doctor Jack was born and lives with a disease called Cystic Fibrosis. While this is thought of primarily as a lung disease, the truth is it affects nearly every major organ and system of his body. At one month old, Jack received this diagnosis and the first of what would become one of many daily life saving medications. This medication allowed him to digest food, something he had failed to do every day since he was born. The price tag on that medication? I was responsible for $240 per month.

 At 3 months old, Jack required another medication vital to his life. His mucous had become so thick in his sinuses that it was the consistency of chewing gum, and he struggled to breathe. His doctor prescribed a new daily medication that would help him breathe. 

My baby was struggling to breathe, and we had a solution available but the doctor told me that we would need a prior authorization from our insurance in order to fill the prescription. I called my insurance to ask how long this would take and was told 7-10 days if approved. IF approved. My baby needed to breathe and I was being told it may or not be approved for 7-10 days. AND the price tag on that medication?  I was responsible for $1,200 per month. 

As Jack ages, his disease requires him to take more and more medicine. New innovations in research and development are resulting in some extraordinary medications that have an even more extraordinary price tag. The median cost of medications for a person living with Cystic Fibrosis in the United States is nearly half a million dollars a year. Depending on your insurance plan, the cost to your family can vary anywhere from several hundred dollars per month to thousands. This is for life-saving medication, and I don’t think my son’s life should have a price tag. 

Every single day families like mine sell our things online or in yard sales, or start go-fund-me campaigns in an attempt to afford the medications our babies need. We do everything we can to avoid medical bankruptcy. We do everything we can to get the medication that keeps our kids alive.

What do we need to fix this broken system and change it to promote the well being of our chronically ill, rare disease, and disabled populations? We need formularies to no longer exist. We need prior authorizations to no longer exist.  We need innovation, research and development of new medications to continue, but the cost cannot be bankrupting families that are doing everything they can to keep their babies alive. A medication is only life-saving in use if it is accessible to the patient. If I can’t afford it, Jack can’t benefit from it. 

Children like Jack need their government to stand up to pharmaceutical manufacturers, pharmacy benefit managers, and insurance companies and say NO MORE. NO MORE will pharmaceutical companies continue to prioritize bloated corporate profits over patient lives. My son Jack, and all of the children like him, deserve better.

[image description: Little Lobbyists mom and director of operations, Tasha Nelson, speaking at the podium of a press conference for affordable pharmaceuticals.]

These remarks were given on September 25, 2019 at a press conference on Affordable Pharmaceuticals with Speaker Nancy Pelosi.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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:

• H.R. 620 Bill Text

• Committee Report and Dissenting Views (01.30.18)

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