Little Lobbyists families outside Union Station before the rally. We are wearing our blue logo shirts with our name in white letters and the graphics of a child touching a shooting star, heart with an EKG line, and the American flag. Union Station’s gray granite walls and decorative pillars and light sconces are behind us. We are using a variety of mobility devices.

“The work you do matters. You are there for families when they need you most — providing comfort, strength, and compassion that inspire us all. Your devotion to the people and communities you serve represents the best of America’s character, and we will always stand with you, ensuring you are seen, valued, and rewarded fairly for the work you do.”

– President Joe Biden, Proclamation on Care Workers Recognition Month 

The White House proclaimed April National Care Workers Recognition Month. To celebrate, Little Lobbyists joined the Care Coalition for a week of events highlighting why Care Can’t Wait! It was an awesome week, and our Little Lobbyists families turned out to participate in every event:

• Rally for Care: The leaders of the Care Coalition, including Little Lobbyists’ Executive Director Elena Hung, made the case for care: “...support care champions who fight for HCBS, care champions who fight for our disabled children. Ask your friends and family to join us. We can do this. We have done it before, and we can do it again!” President Biden joined us, giving a rousing speech re-confirming his support, “Care workers represent the best of who we are in America. We look out for one another in America. We leave nobody behind.” 

• Congressional Town Hall on Care: Lawmakers, union representatives and the acting Secretary of Labor met with advocates and took questions. Little Lobbyists mom Jeneva Stone asked Senator Elizabeth Warren what she would say to those who tell us we can’t afford home care. Senator Warren gave a passionate response in which she emphasized that caregiving is part of our country’s infrastructure. She began by giving a  shout-out to our Little Lobbyists families, “who are there in every fight!”

• White House Care Convening: Key members of the Administration, including Secretary of Health & Human Services Xavier Becerra and the Director of the Domestic Policy Council Neera Tanden, detailed steps the Biden Administration has already taken to build a robust care infrastructure, and emphasized their commitment to do more. The leaders were joined by a diverse panel of caregivers and recipients, including an AAC user and family caregiver, who attested to the urgency of our nation’s worsening care crisis.

Care Can’t Wait is a national coalition committed to building a 21st century care infrastructure, including investments to expand access to childcare, paid family and medical leave, and home-and community-based services, and to ensure good jobs for the care workforce. Care Can’t Wait believes that “care is at the center of our families, communities, and economy.”

Little Lobbyists is a part of the Care Coalition, shining a spotlight on the needs of our kids: access to community-based long-term services and supports that keep our children in their homes and communities, where they belong; making policymakers aware that our kids with complex medical needs & disabilities require licensed and fairly compensated care workers,  including home nurses and other home care and direct support professionals; and advocating for the home care needs of disabled adults, because we want our disabled children to survive and THRIVE into adulthood. 

Enjoy this slideshow of our families in action! Visit our website! Follow us on social media (@LittleLobbyists on Facebook, Instagram, X, and Threads) and join our Facebook community page! Better yet, become part of our movement by sharing your child’s story with us!

Image descriptions will appear as the cursor hovers over the photo.

Isra'El & Rico pose outside Union Station. They wear gray suit jackets with LL pins on the lapel and LL t-shirts underneath. Both have close-cropped, tightly curled dark hair. Rico has a mustache.

Laura, who has long hair and sunglasses pushed up on top of her head, smiles outside Union Station. Kody is to her right.

Laura and Elena pose outside the station. Laura has a large red bag over her shoulder. Elena has bright magenta streaks in her dark hair.

Simon stands using his walker and points to something in the distance. Rob, who sits in his wheelchair, is to the left.

Kody, rolling along in his wheelchair, gives a thumbs-up as our group is escorted into the rally. Jeneva and Rob are behind him. Rob’s Medicaid nurse Ryan pushes his wheelchair.

Megan holds her son Gabe in her lap inside the rally. Both are wearing N95 masks and they are seated alongside a beautiful marble wall in earth tones.

Rob, wearing his light blue wheelchair cape and a matching LL baseball hat, smiles as he waits for the rally to begin.

Rico and Isra’El pose with Gabe in-between them. They are smiling.

Stephanie and Rob pose in their wheelchairs inside the ADA section at the rally.

Elena and her son Khalil wave from behind a metal barrier just outside the ADA section. Khalil is wearing an N95 mask.

Simon, wearing his headphones and glasses, gives the camera a knowing and pensive look as he waits for the rally to begin.

Danielle, who has elaborate cornrows and is wearing her Little Lobbyists royal blue shirt (as are all our members), holds her toddler daughter Destiny. They are looking at each other and smiling.

Destiny raises her arms high in joy. Behind her is the stage with a row of American flags.

Dan and his daughter Claire are seated at the rally, talking to Jeneva, who wears an off-white coat and has her back to the camera.

Elena speaks from the stage at the rally. To each side of her are other speakers.

President Biden walks toward a group of caregivers to the right. They hold signs expressing support for care. Among them is Jamie, who has long, dark curly hair. Behind them is a large sign on the stage, royal blue with white lettering: Care Can’t Wait.

Gabe and Destiny pose in front of the stage, which is all in blue and white with American flags.

A group of us pose in front of the stage—some are using mobility devices, some are standing, some are kneeling on the floor.

Laura and Jeneva pose on either side of Rob, who is smiling broadly from his wheelchair and wearing his LL baseball hat and his Clark-Kent-style glasses.

Megan and her young son Gabe pose in front of the stage.

Rico and Isra’El pose in front of the stage, looking sharp and serious!

Jamie, her daughter Claire (who uses an adapted stroller) and son Ben pose in front of the stage, with Izzy, a careworker for the late Day Barkan.

Another group of Little Lobbyists families poses in front of the stage, some standing, some using mobility devices. Danielle’s daughter Autumn holds a sign that says “Care Can’t Wait.”

At the Congressional Town Hall, Rob smiles at Destiny, who is being held in Danielle’s arms. Destiny is giving Rob the once-over. They are in a large conference room with banks of rectangular overhead lights.

Senator Bernie Sanders, wearing a suit and with his trademark wild white hair, speaks energetically into a microphone at the Town Hall to a tightly packed audience who sit on folding chairs.

Jeneva holds a microphone, with Rob next to her in his wheelchair, in 3/4 view of their backs. She is asking a question of Senator Elizabeth Warren, who wears a red suit jacket and is seated next to Senator Bob Casey and the host Sarah Jones.

Our Little Lobbyists families pose in front of the Town Hall backdrop, white with the blue logo of the Care Coalition and various slogans about care. Rob is posed in his wheelchair at the front. From l to r: Danielle holding Destiny, Daya, Elena, Jeneva, Val, Aire.

Rob poses solo in front of the Town Hall backdrop. He is smiling and holding the grip switches for his communication device.

Secretary of Health and Human Services, Xavier Becerra speaks from a podium in an elaborately decorated 19th century meeting room in the Old Executive Office Building, which is adjacent to the White House. Behind him is a large bronze wall decoration framed in ochre marble that features an angel holding tablets above a large shell, and a set of old-fashioned globe-style lamps above everything.

Rob poses in-between advocates Carson Covey (a fellow wheelchair- and AAC-user) and Carson’s sister Brynne. Behind them are two American flags flanking a decorative bronze doorway.

Rob and Jeneva pose outside the White House, under a white arrival canopy with the presidential seal.

#1 Vaccines!

Vaccinations for COVID-19 began to roll out at the beginning of the year and we’ve worked hard to raise awareness and advocate for all our kids to be protected. We’re hoping shots for our littlest lobbyists and boosters for big kids will be available soon. Please keep doing all you can to protect yourself, your family, and all of us - wear a mask, get vaccinated and boosted as soon as you can! To learn more, visit vaccines.gov.

In the photo: Little Lobbyists Simon gets his COVID-19 vaccine!

#2 Virtual Meetings, Real Advocacy!

We love introducing legislators to our kids, and COVID didn’t change that. Like so many others, we took our work online and are continuing to make sure kids with complex medical needs and disabilities have a seat at the (virtual) table.

In the photo: Little Lobbyists Taryn and her mom Dawn meet with Senator Sinema and her Team.

#3 Congressional Testimony!

The American Rescue Plan included many provisions to help all our families, like the Child Tax Credit, funding for home and community based services for people with disabilities, and subsidies to make health insurance more affordable. Our Director of Communications, Laura LeBrun Hatcher, was invited to testify in the House of Representatives to explain why these provisions are so important, and why they must be made permanent.

In the photo: Little Lobbyists Simon’s mom and Director of Communications Laura LeBrun Hatcher provides testimony to the U.S. House of Representatives.

#4 Celebrating the Americans with Disabilities Act!

This year the ADA turned 31 and Little Lobbyists Executive Director Elena Hung was invited to a celebration marking the occasion in the White House Rose Garden. At the event, President Biden acknowledged that there is still much work needed to remove barriers to freedom and equality for Americans with disabilities and he affirmed his administration's commitment to advancing Disability Rights. Watch the ceremony here.  

In the photo: The president surrounded by the Vice President, disability advocates, Speaker Pelosi and other leaders mark the anniversary of the ADA.

#5 Meeting with the Vice President!

Twice this year, Little Lobbyists had the opportunity to meet with Vice President Kamala Harris to represent our families and discuss what our children with complex medical needs and disabilities need to survive and thrive. Communications Director Laura LeBrun Hatcher joined the Vice President at an event celebrating the Affordable Care Act and Little Lobbyists Claire’s mom Jamie Davis Smith sat down with the Vice President at her own kitchen table to discuss the importance of caregiving. Read Jamie’s account of her experience here.

In the photo: Vice President Kamala Harris sitting at the kitchen table for a conversation on caregiving with Little Lobbyists Claire’s mom Jaime Davis Smith.

#6 Care Can’t Wait!

President Biden’s agenda calls for a major investment in our country’s infrastructure — including social spending on health care, education, and caregiving as part of the critical foundation our country must support to remain strong. The social infrastructure bill is called the Build Back Better Act. Working closely with Senator Casey and Representative Dingell, Little Lobbyists provided input on the policies and funding our loved ones with complex medical needs and disabilities need to thrive at home instead of being forced into dangerous institutions. For the past several months we’ve advocated alongside many other organizations to get this historic legislation passed because for our families ”Care Can’t Wait!” To learn more, visit www.littlelobbyists.org/carecantwait.

In the photo: Activists lit up the night with “Care Can’t Wait” signs in front of the Capitol following a 24 hour rally.

#7 Powerful Partnerships!

In a year full of historic challenges and opportunities, we worked collaboratively with several organizations to advocate for the passage of the Build Back Better Act including: the Arc, Be A Hero, the American Association of People with Disabilities, the Autistic Self Advocacy Network, Caring Across Generations, the Center for American Progress, MomsRising, the National Domestic Workers Alliance, SEIU, and many more. In addition, we partnered closely with Ady Barkan’s organization Be A Hero to help share our families’ stories about the importance of home and community based services on a national platform.

In the photo: Director of Community Engagement and Little Lobbyists Sara and Emma’s mom Stacy Staggs shared her family’s story nationally through our partnership with Be A Hero.

#8 A “mom to mom” conversation with a U.S. Senator!

Executive Director Elena Hung had a mom to mom conversation with Senator Maggie Hassan. Elena and the Senator were both led to national advocacy through their experience as parents and caregivers of disabled children. They discussed the importance of Medicaid home and community based services and the policies we need to ensure our children have the civil rights they deserve. Watch the video here.

In the photo: A screen shot from the video call between Senator Hassan and Little Lobbyists Xiomara’s mom and Executive Director Elena Hung.

#9 The Build Back Better Act passed the House!

The Build Back Better Act includes historic investments in home and community based services, access to health care, education, childcare, paid leave, lower drug costs, and more that our families need. Our Executive Director Elena Hung was invited to the White House with a small group of disability advocates to support the final push to the House vote. Our work to get this bill passed is far from over – the legislation is currently in the Senate and intense advocacy will be needed to get it over the finish line. 

In the photo: Disability rights leaders, including our Executive Director Elena Hung, with a White House Associate Director beside the White House.

#10 Little Lobbyists are invited to the White House!

We work hard but also remember to take time to celebrate. At the invitation of the President and the First Lady, we spent some time viewing the beautiful holiday decor at the People’s House. Masks were worn and social distancing observed, but the lights shined just as bright. We appreciated the care taken by the Administration to ensure this year’s subdued holiday celebrations were as COVID safe as possible ahead of the Omicron surge.

In the photo: Members of the Little Lobbyists team, Elena Hung, Laura LeBrun Hatcher, and Jeneva Burroughs Stone stand in front of a stairway lit with candles leading to a festively decorated entrance to the White House before they tour the holiday decor.

In the coming year, Little Lobbyists will keep showing up to represent our families and make sure ALL kids with complex medical needs and disabilities have a seat at the table to inform the policies that affect them. To be a part of our ongoing advocacy, follow us on social media, share your story with us, and if you can, please consider donating to support our family-led and volunteer-powered work. 

Wishing everyone a happy and healthy 2022!

I first heard Sister Simone speak at the Women’s March in Washington D.C. on January 21, 2017. Like many people on that unseasonably warm winter day, I’d never been to a protest march before. I was unsure what to expect, and uncertain if I belonged. 

Sister SImone on the jumbotron at the Women’s March. Photo from networklobby.org

As I made my way toward the Capitol I joined a growing sea of pink hats and smiling faces. People carried signs quoting Mother Teresa and Dr. King, little girls in kitten-eared beanies bobbed above the crowd upon their mother’s shoulders, and members of the local Black church offered marchers water, granola bars, and words of encouragement as we passed.

By the time I reached the edge of the Mall my nerves had dissipated. The crowd slowed to a stop, and the clear voice of a smiling woman with a neat gray bob rang out from the nearest stage. 

As I listened I realized she was quoting scripture:

“... they say that we were gathered in one place - frightened and afraid … afraid to go out … and then a mighty wind came. A mighty wind that stirred the hearts and lifted the courage and let people know we’re not alone. We’re together. We’re together regardless of our faith, regardless of our color, regardless of who we define as our neighbor. We are all neighbors to each other and that is the deep truth our nation was founded on. We are our sister's keepers. We are our brother’s keepers. It is that truth that will help us to mend the gaps in our society.”

In that moment, I was transported back to my all-girls Catholic high school days in Baltimore City, where the Sisters of Mercy filled our heads and hearts with the knowledge that we were put on this earth to make it better. I was shocked, yet equally unsurprised, to learn the speaker was a Catholic sister – once again calling me to be a happy warrior in the mission for social justice. 

I knew I was right where I belonged.

That day, Sister Simone gave me my marching orders and I’ve been following them ever since. In our quest to make this world a better place through the work of Little Lobbyists, Sister Simone has been a constant support and source of inspiration. 

Sister Simone stands to my right, next to Elena Hung and Ady Barkan, as I speak at a press conference in the Capitol at the invitation of then-Leader Nancy Pelosi.

Later that same year, in December 2017, Sister Simone stood by my side as I spoke at my first “big” press conference with then-Leader Nancy Pelosi. Sister Simone nodded in quiet encouragement as I asked Congress to protect our children with complex medical needs and disabilities. She later invited us to her office at Network Lobby, and asked us to teach her organization about our children and what they needed. Over the next four years, we found there was always room for our families on Network Lobby’s national “Nuns on the Bus” tours, and at stop after stop Sister Simone lifted our families’ voices on her platform. She lent us her strength and amplified our message, adopting our cause as one of her own.

This month, Sr. Simone is retiring as Executive Director of Network Lobby. Though I know we Little Lobbyists and so many others will miss her leadership, I also know she will always be with us. I can think of no better way to honor her than by recommitting ourselves to following her charge –  

“So my friends, can we commit in this moment to exercise joy, to claim our passion, to have curiosity about our neighbors and then, share it around. Because if we each do our part, we the people will triumph, we the people are what our nation needs, and we the people will make the difference. Let’s do it together.”

Thank you, Sister Simone. 

Click here to listen to Sister Simone’s full speech at the Women’s March in Washington D.C., January 21, 2017: https://youtu.be/wcrbgSKF80U

Elena Hung and Sister Simone

Elena and Sister Simone hug at a Nuns on the Bus tour stop on a sunny day with a blue sky and palm trees in the background.

Nuns on the Bus Tour Stop

Elena stands at a wood podium with members of the Nuns on the Bus tour stop behind her and Sister Simone to her right.

Sister Simone and Abby

Sister Simone hugs Little Lobbyists Abby who is seated in a wheelchair. The Nuns on the Bus tour bus and a small crowd of people stand behind them.

Erin Gabriel speaks at the Nuns on the Bus tour

Erin holds the mic as she speaks at the Nuns on the Bus tour stop in Pennsylvania, her daughter Abby and members of the Nuns on the Bus group are beside her and the tour bus is behind her.

Angela and Myka at the Nuns on the Bus tour stop in CA

Little Lobbyists Myka and her mom Angela speak at the Nuns on the Bus tour stop in California with Sister SImone and members of the Nuns on the Bus tour group.

Nuns on the Bus Tax Justice Truth Tour

Little Lobbyists Simon, and his service dog Tigger are at the Nuns on the Bus Tax Justice Truth Tour. Sister Simone, Simon’s mom Laura Hatcher, and his Aunt Tess Veloso stand behind him.

December 2017, Leader Pelosi's office

From left to right: Little Lobbyists Simon, his Dad Brian Hatcher, Sister Simone, Laura Hatcher, and Ady Barkan in then-Leader Pelosi’s office before a press conference in the Capitol.

Little Lobbyists Moms and Sister Simone

Little Lobbyists moms Erin Gabriel, Tasha Nelson, Elena Hung, and Stacy Staggs stand with Sister Simone for a quick selfie in the Capitol