From the very beginning, when a small group of families of children with complex medical needs and disabilities made a stir by visiting Senate offices in 2017 to protect the Affordable Care Act, Little Lobbyists understood the importance of representation. We knew legislators needed to see our kids with complex medical needs and disabilities – with their caregivers, medical and mobility supports, loved by their families, living in the community – to understand that our kids needed their legislators to protect their access to health care and inclusion, the same things every child needs.

Halloween trick-or-treating in cute costumes while visiting Congressional offices was an opportunity for our kids to have fun (while advocating). Like magic, doors we’d been knocking on for months finally opened and, for a moment, some of the barriers seemed to disappear. 

But some doors never opened. From 2017-2020, the ableist barriers were clear even before we knew what the former president actually said about his disregard for our children’s lives. We never thought we would see our families visit the White House.

Fortunately, Americans chose new leaders for the White House in 2020, including Vice President Kamala Harris, who met our children as a Senator and worked to help us protect them. Despite this connection, we could hardly believe it when our families were invited to visit the White House for the first time. A few years and many visits later, we’re still awe struck by the White House’s beauty and history, but we also know that our families are truly welcome. The Biden-Harris White House has worked to go beyond inclusion, asking for our feedback and continuously improving accessibility to ensure families of kids with complex medical needs and disabilities understand that the White House is our house, too.

We shared our dream for as many kids with disabilities as possible to visit with White House staff, and in 2023 the White House hosted the very first disability friendly Easter Egg Roll in history, followed by the first disability friendly Halloween celebration. This year, events were expanded to include more kids with disabilities, and the White House unveiled a re-imagined tour that prioritizes accessibility.  

For our kids with disabilities and complex medical needs – with their caregivers, medical and mobility supports, loved by their families, living in the community – to be integrated as a welcome part of White House traditions is a truly joyful thing. It’s also powerful representation. When our families share space with those who make decisions that impact our lives our needs and opinions are also present. More importantly, when our families and kids with disabilities see themselves within the halls of power, they know that they belong.

The fact that people with disabilities and complex medical needs belong everywhere they want to be and can live great lives with support – like everyone else – has been obscured throughout history by pervasive, systemic ableism. Though we still have far to go, significant progress has been made in recent decades, and disability rights in the U.S. have had bipartisan support: in 1982 President Reagan created the first Medicaid waiver; in 1990 President Bush Sr. signed the Americans with Disabilities Act; in 2010 the Patient Protection and Affordable Care Act was made law by President Obama. 

But from 2017-2020 President Trump worked to undo much of that progress, abruptly ending the era of bipartisan support for disabled Americans. Since then, the former president has shown contempt for the lives of our children, using disability as an insult and slur in recent days.

In 2020, voters rejected this abelism, and for the past four years our families have been safer: access to health care has expanded, disability civil rights have been improved, and our children have seen themselves respected and valued by our nation’s leaders. 

Today, the choice to reject ableism is once again before us. Our families know that disability is part of life, we will all need to give or get care, and living self-directed lives in our own homes and communities is a universal civil right. 

Before you cast your vote in this election - we ask you to see the lives you impact with your decision. The care you save could be your own. 

First Dr. Lady Jill Biden meets Little Lobbyists (and Astronaut) Adonise with his sister, mom Anne, and Aunt, after reading a story for the children during the White House 2024 Hallo-read celebration.

Little Lobbyists Destiny (an Egyptian princess) and Simon (Santa) hold hands and pose with their families during the White House Hallo-read celebration!

Little Lobbyists Cole and his mom Victoria hang out with loveable alien Stitch on the White House Lawn

Egyptian princess Destiny rides in style as her brother the Pharaoh pushes her “chariot” to collect treats

Two cute astronauts (Little Lobbyists Adonise and his sister Adriande ) take a break from NASA to sit on the White House lawn and check out the treats they collected

Little Lobbyists Santa (Simon) with Jack and Sally from the Nightmare before Christmas (aka Laura and Brian, his mom and dad) strike a pose in front of the White House Hallo-read decorations

Little Lobbyists mom, Sam, and her daughter, Jo, pose with then-Senator Kamala Harris in a Senate office building corridor. Harris is crouched on her heels next to Jo’s medical stroller (and its various medical equipment), and is giving Jo a high-five. Sam is on the other side of Jo’s stroller, wearing a black sleeveless dress and smiling.

On Sunday, July 21, President Joe Biden announced that he would not seek re-election, and endorsed his Vice President, Kamala Harris, to be the Democratic nominee. Little Lobbyists would like to express gratitude for all that the Biden Administration has done for our families–expanding Medicaid access, supporting the Affordable Care Act, working to increase funding for Home and Community-Based Services (HCBS), and updating the Section 504 regulations for the Department of Health and Human Services.

With a new generation of leadership taking the reins, we’d like to highlight the work Kamala Harris has done on health care and Medicaid services. Harris has been a supporter of our families since our founding in 2017 when she listened to our children’s stories, shared them with the country, and helped stop congressional Republicans from dismantling the ACA. Her presence meant a lot, and she has been consistent in her support of our children’s rights to health care and Medicaid services ever since.

Reducing the Cost of Health Care

Harris is a strong supporter of the ACA, as well as Medicaid expansion. Both issues are critical to our families, many of whom are on waiting lists for the Home and Community-Based (HCBS) waiver services that keep medically complex and disabled children in their communities, where they belong. Keeping private health insurance affordable is critical. 

The next president will decide whether Americans get to keep the enhanced ACA subsidies that were part of the American Rescue Plan (and extended by the Inflation Reduction Act,) which resulted in an additional 6.3 million people who were able to access health insurance. The enhanced subsidies will expire at the end of 2025. 

Commitment to Home Care

The American Rescue Plan provided $37 billion in funding for states to improve HCBS. AS VP, Kamala Harris traveled the country, encouraging states to use funds to improve caregiver wages, subsidized housing, and other initiatives to shore up our nation’s care infrastructure. While the funds were seen as a “downpayment” on improving America’s home care system, they will also expire in 2025. 

Kamala Harris has shown real commitment to understanding the complexity and overwhelming need of our families to access care for our medically complex loved ones. Her 2021 listening tour included visiting the home of Little Lobbyists’ Jamie Davis Smith, mother to Claire. Of the Vice President, Jamie said she “was warm and engaging, and she seemed genuinely interested in how families like mine struggle.” 

Speaking on this issue last winter, Harris said, “every caregiver in our nation deserves fair pay, safe working conditions and respect. And every person in our nation deserves access to high-quality care, so they can live with safety, dignity and self determination.” She also supported the President’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, which authorized the administration to seek avenues for improving access to care. 

Then-Senator Harris speaks to Little Lobbyist Xiomara in an ornately paneled meeting room in the Capitol building. Xiomara regards her with interest. Xiomara’s mom, Elena, stands on the other side of Harris and is wearing a red dress.

Family Issues

A recent article in The 19th has dubbed her campaign “The Momala Economy,” after the nickname her stepchildren gave her years ago. Harris has championed a six-month paid family leave that would also include “chosen family.” As both Senator and Vice President, Harris has been a strong voice in favor of reproductive rights, paid family leave, elder and disability care, and other family-related issues. During her Senate career, she sponsored the National Domestic Workers Bill of Rights, which would “help to create a standard that provides the respect, dignity, and recognition that all domestic workers deserve.” Most paid caregivers are women of color, who are paid little and struggle to care for their own families. 

Why does Harris understand caregivers so well? Kamala Harris was raised by a single mother, Shyamala Gopalan. When her mother became ill with cancer, Harris helped her remain in her own home until she passed away in 2009. Recent news stories suggest Harris will continue a focus on the care economy begun by President Biden. 

As the Harris campaign gathers steam, we hope to hear more specific policies and proposals on health care, caregiving, bodily autonomy, and disability.