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

Adonise as an infant in the NICU, held upright by his parents, who have expressions of pure love and joy on their faces. Adonise wears a bright green and yellow outfit, accentuated with red trim. He is connected to the usual NICU supports, such as a pulse/ox and a breathing tube.

There was a time while I was caring for Adonise as an infant in the NICU when people tried to apologize for things they did not understand about my son. The unknown and the undescribed. He spent 361 days in the neonatal intensive care unit (NICU), where he received a tracheostomy to help him breathe, and was diagnosed with cerebral palsy.  

Adonise is now 5 years old, and he loves flying, attending school, and spending time with his family, especially our large family gatherings. Adonise dances and lives in joy. Since the NICU, in addition to his tracheostomy and cerebral palsy diagnosis, he has also been identified as Autistic. He lives a blessed life, with many adventures and full of love, but the nights from the NICU still stay with me. 

Many days I listened to medical professionals attempt to describe the life my son would lead with all his “challenges,” as they called them. I once asked an ICU attending physician, “Who gets to define what a ‘challenge’ is?” These complex medical elements may be part of Adonise’s life, but we shouldn’t describe them as “difficulties” or “challenges.” 

That first year, Adonise spent time in two NICUs: one in New York City, and one in Columbus, Ohio. In Ohio, the staff did a better job aligning parents with parent advocates who could speak to the very specific lived experiences our family was facing. Although this helped us, I often think how much more powerful it could have been if we had built more relationships with adults with disabilities in the NICU. Neurodivergent adults provide a different perspective on what life can be for our children. We can learn from hospital staff about tracheostomy life or G-tube care, but my adult friends who have trachs constantly provided perspectives that helped me navigate my son's disability as a partnership.

These partnerships are important to our children’s futures. Medically complex children are socialized as if they will have less fulfilling lives, and this socialization often starts in a medical setting. Most of the time we can assume that medical professionals are not living with medically complex needs, they are ‘clocking in’ to them. They evaluate scans, they assess your child, they bring you into a room, and they ‘med-splain’ a diagnosis or condition that will become part of your child’s life. There is so much gloom and doom instead of focusing on the rich opportunities associated with a new diagnosis. Is it fair to provide “information” on a diagnosis as if it is a disease? Is that the way we need to frame life changes? 

Ableism has always taken a front-row seat on these journeys. Medical professionals assume they can explain what life will be like with a diagnosis or medical intervention. Why do doctors and nurses feel they have the right to illustrate a life they only understand through the lens of a professional, not a personal context? 

Adonise lies in a hospital bassinet while his dad stands over him, holding a Dr. Seuss book so Adonise can see the pictures and reading aloud. Both look content.

Adonise was constantly confronted with ableism I wasn't then prepared to advocate against. Since he couldn’t speak up for himself as an infant, we as his parents had to deal with medical professionals and their fear-based advice masked as expertise. Every time we were given any instruction, the tone was always pity, and it frustrated me. It was truly all gloom and doom to them. 

Then one day I met a neurologist who taught me a lesson I will never forget. Part of advocacy is coming to terms with who you were before you had the right education. After all these doctors gave us their opinions on Adonise, I asked to speak to a neurologist because, in my limited view of children's development, I assumed a neurologist would have the answers. 

I would encounter this doctor twice. The first time would be at Adonise’s bedside where she said, "I do not have a crystal ball, Anne. I cannot and will not tell you what your child’s future will be." I remember being so upset with her.  I remember thinking to myself, you left your office to come and tell me nothing and still bill hours? 

A year later, we had our scheduled neurology follow-up by phone, one-year post-hospital. We had adjusted well to our new lives. We got on that call, and I immediately recognized the neurologist from Adonise’s bedside, and I burst into tears. I now understood why she refused to tell me about my child's future: nobody can tell you what your child's life will be like. No one should have that authority.

Life is truly what you make it. Adonise would not be defined by anyone, and he has grown into a remarkable boy. His life is a testament to the fact that we all have the power to shape our own destinies. Words cannot express how thankful we were to everyone who worked around the clock to save his life. However, if more staff and physicians were exposed to more medical complex journeys from various disabled adult perspectives, maybe they could help inspire children and families to think beyond their diagnosis. How can we get such policies in place to empower our families?  

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Anne Louis is Adonise and Adriande’s mom. Anne is a family advocate representing Harlem, NYC. She is a digital technology professional who currently works for Charter Communications. Anne speaks several languages, but aspires to become more fluent in disability policy. She is passionate about her Haitian heritage, and is eager to be a bridge between complicated policy  paperwork and the quality care everyone deserves regardless of their education or ability to speak English. 

Adonise, an elementary-school-aged Black boy, poses with his arms out wide on the rooftop plaza of the MLK, Jr. Library in Washington, DC. He’s wearing a teal-blue Little Lobbyists t-shirt and khaki pants. The DC city skyline is behind him.

My son Adonise is a second-generation Haitian-American who has a teacher and a technology professional for parents. Adonise is curious, rambunctious, funny, and intelligent. He’s a budding drummer, and he loves the playground and to wave the Haitian flag every morning. We call him Donnie, but I call him Don. He was born prematurely and came home just 4 days shy of his first birthday, after 361 days in two different Neonatal Intensive Care Units (NICU) in two different states. Donnie’s disabilities include autism and cerebral palsy. He also has a tracheostomy to help him breathe.

Our family of four journeyed to Washington, DC, to learn how we can better support my son's needs, and we could never have imagined how our cup would fill with so much love, support, and knowledge. Imagine venturing to DC to learn, and then just be baptized by the support and awareness of so many amazing people. I wanted to dive into understanding how I can educate those in my community about Home and Community-Based Services (HCBS), Medicaid services that help children and adults live in their communities, where they belong. My goal was to bring what I learned back to Harlem.

As representatives of Little Lobbyists, we attended the White House Disability Pride Month Convening and, the next day, the Care Can’t Wait Coalition’s Community Integration Summit. Throughout our lives, we have encountered many transformative experiences. However, this moment stands as the most significant intersection for me. For the first time, I felt a huge sense of belonging. My identity includes various elements: a mother, a multilingual Black woman from Harlem, NYC, a parent to extraordinary children, and the wife of a supportive Black man. Adonise, too, felt free, felt the love, felt seen. He was ecstatic visiting the sights in DC, meeting other disabled children and having fun, and just playing and being a kid.  

Wearing his eyeglasses and Little Lobbyists t-shirt, Adonis poses on a city street with the U.S. Capitol building the distance. He has both arms raised above his head and flexed in an expression of exuberant power.

When Adonise received an invitation to the White House, I was apprehensive about my lack of knowledge in navigating this unfamiliar space. But at the event, when Anna Perng, Senior Advisor at the White House’s Office of Public Engagement, stepped up to the microphone and said: "In this room, we welcome all differences, and we will not silence anyone," her words struck a chord with me, and as the speakers shared their personal experiences, I was moved. Their desire to thrive in this world, despite the challenges they faced, bubbled up emotions within me.

The event celebrated the achievements of the disability community and highlighted the importance of continuing the fight for disability rights, led by those with lived experience. My heart swelled when disability rights lawyer and activist Haben Girma concluded the session by discussing Helen Keller's published works. Keller’s and Anne Sullivan’s stories were a constant source of inspiration during our hospital stay, especially Sullivan teaching Helen to build on her abilities. While my son's will to survive was a driving force for us, we didn't just want him to survive, we wanted him to thrive, regardless of the limitations imposed by the perspectives of his medical team.

Unfortunately, ableism can feel as if it is in the very fabric of the Neonatal Intensive Care Unit (NICU) and PICU in the U.S., woven into every knot of these institutions. Ableism influences how specialists approach acute events and discuss quality of life. Imagine the positive impact if disability advocates worked alongside, or provided training to these professionals, transforming the narrative around what life with complex medical needs can look like. 

Adonise sits, smiling broadly, in a meeting room chair in front of a large banner that reads “Disability Integration Makes Our Lives and Communities Whole.” At the top of the banner is the Care Coalition logo, a corona around the words “Care Can’t Wait.” To the right of Adonise is an electronic sign displaying the topic of the next panel and the speakers on it.

At the Community Integration Summit, we listened to many panels filled with adults with disabilities, which meant recognizing that advocating for people with disabilities starts with teaching our children self-advocacy from the start of their journey. I was eager to have a more extensive conversation on all these issues I had recognized for years. 

I had an opportunity to ask a question of the panelists, and decided to express my concerns about the need for training NICU, PICU and ICU physicians on the positives of living with complex medical needs and disabilities. As I was asking my question, it dawned on me, “Oh God, I am in a room where everyone understands.” I was overwhelmed with emotion because for years we have been yelling into this void and I had had enough. There are not enough people with disabilities that work within the ICU space, and I want there to be more. 

It was also amazing to see my husband speak up for the fact that there were not many dads, especially dads of color, in the disability advocacy space. He hears so many maternal perspectives on caregiving, but has rarely been able to see fathers like him that are in the thick of it. 

Overall, our time in DC spoke to much of the work and education we have to continue to do as a family. We are strong and come from a long history of revolutionaries. May we always tap into that and teach Donnie how he will do the same so he can create the blueprint for the next generation of kids like him. 

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Anne Louis is Adonise and Adriande’s mom. Anne is a family advocate representing Harlem, NYC. She is a digital technology professional who currently works for Charter Communications. Anne speaks several languages, but aspires to become more fluent in disability policy. She is passionate about her Haitian heritage, and is eager to be a bridge between complicated policy  paperwork and the quality care everyone deserves regardless of their education or ability to speak English. 

Isra’El (l) & Rico (r) Winston. Father and son, they are two Black men wearing gray suit coats with Little Lobbyists t-shirts underneath. They stand on a street in Washington, DC.

This spring, PBS aired Understanding Autism, a documentary by filmmaker Scott Steindorff, who was diagnosed with autism as an adult. Steindorff wants to reframe the conversation about autism by focusing on the incredible talents and personalities of autistic people. The film is a rewarding and refreshing look at neurodiversity. 

Little Lobbyists Isra’El Winston and his dad Rico were tapped to share their story. I wanted to know more about how they got involved, what they learned, and how this advocacy experience changed them.  

You can watch Understanding Autism on the PBS website through May 2027. 

How did you get involved with the film project? 

Rico: Isra’El and I became involved with the film project through Dr. Rebecca Landa, Vice President of the Kennedy Krieger Institute. She is also Founder and Director of

CASSI (Center for Autism Services Science and Innovation) at the Kennedy Krieger Institute.

I was impressed by the positive way in which autism is presented in the film. Too often in mainstream media productions, disability is presented as tragic. What do you feel are the biggest positives about autism? And why?

Rico: I believe that the biggest positive for myself about autism is the fact that I have found my life‘s purpose and calling because my son has autism. I have grown to learn the significance of advocacy and accepting the individual differences in all individuals, and celebrating their individuality.

What was it like to work with the director, Scott Steindorff, who is autistic himself? What did you most appreciate about his approach?

Rico: One of the noteworthy facts is that Scott Steindorff himself is autistic. I truly appreciate that by him being autistic himself, he understands the challenges–whether it’s the mountain top highs or the valley lows–when it comes to autism acceptance and even self acceptance.

What were your favorite parts of the film? And what were your favorite parts of making the film?

Sneak Peek YouTube video for the film: Rico is hugging Isra'El. They are seated on a couch against a window. To view the entire film, click here.

Rico: My favorite part of the film was listening to the amazing journeys of each uniquely, individually designed and created participant. My favorite part of making the film was it provided us the opportunity to share our journey of love as we navigate, for myself, loving a child who has autism, and, for my son, navigating his own individual journey and self-awareness and celebrating his uniqueness.

Isra’El: My experience was a little uncomfortable. Talking about my experience made me a little sad. What I did like is that I realize that by me sharing what I have gone through, that will help other children. 

One thing that was so different was the makeup artist preparing my face to be filmed.

What are the main takeaways you hope viewers will have after watching?

Rico: I hope that viewers’ hearts are touched by the strength and resilience and the love which the documentary shares: that each and every one of us deserves to be celebrated,  regardless of our differences and our unique individuality, because, after all, that is exactly what makes each of us special.

Isra’El: I would want people that watch the documentary to understand that simply because people are different isn’t a bad thing, because we all are different, and because we all are different is a good thing, and that is what makes me special and everyone special.

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Isra’El Santíago Winston is a Super Hero Advocate. Isra’El has over 8 years of experience in autism and disability advocacy. He initially began advocating for himself during his IEP team meetings at the age of 6. In partnership with his father, Isra’El began his journey advocating for children with disabilities and their families. Isra’El has participated in numerous radio, television and news networks interviews, including NPR, Baltimore Sun, HBO Cinemax Urban Action Showcase, PBS, ABC and Fox News. Isra’El enjoys horseback riding working on science projects, traveling, and most of all being a Super Hero Advocate!!

Rico Winston is the single parent of an amazing 14-year-old, Isra'El. His son, Isra'El, has a diagnosis of ASD. As Isra'El and Rico traveled together along their journey of love navigating life with autism, Rico discovered his life's purpose; to serve others with autism. He currently serves as a member on the Friends of CASSI family support group at the Center for Autism Services, Science and Innovation (CASSI*™) at Kennedy Krieger Institute. Rico also holds membership on the Scientific Advisory Board and Community Advisory Council with SPARK for Autism - Simons Foundation. He is a member of the Board of Directors for The Arc Baltimore, chairperson of The Arc Baltimore Governmental Affairs Committee, and board member for the PCORI NYU Science of Engagement Community Advisory Board. Rico is also a member of Little Lobbyists, a national organization advocating for children with complex medical needs and disabilities. He is a graduate of Maryland's Partners in Policymaking (2020), and serves as Director of Community Outreach at The City Ranch Inc., Baltimore, MD.

Jeneva Stone is the Little Lobbyists blog manager.

Photo Credit: Rah Studios. Image: Just some of our nationwide Little Lobbyists family at the Care Coalition’s Community Integration Summit in Washington DC! Image description: A couple dozen children of various ages and their parents pose in front of a tan and black paneled wall at the Martin Luther King, Jr. Library in downtown Washington, DC. Most of the group members wear t-shirts with the Little Lobbyists logo.

In July, the Care Can’t Wait Coalition sponsored several events on community integration in Washington, DC, including a panel at the White House, a Congressional briefing, and a Summit at the Martin Luther King, Jr. Memorial Library. Community integration is at the heart of disability rights, and is supported by the Americans with Disabilities Act (ADA), the U.S. Supreme Court’s Olmstead decision, and the 504 regulations. 

Our Little Lobbyists families were there for all of them! Our families traveled from all over the country to learn from disability experts and to tell our elected leaders that care can’t wait.

The Community Integration Summit offered three of our families the opportunity to speak their truth on the importance of belonging–in our communities, at school, in recreation, in the media, and, frankly, everywhere. You can watch a recording of the summit here.

The summit featured five panels:

• History of Disability Rights, Future of Disability Justice and Intersection with Care

• Community Integration Makes Our Homes and Communities Thrive

• The Disability Lens of Paid Leave and Child Care

• Centering Disability in Storytelling in the Media

• Inclusive Organizing for Change

Photo credit: Tirrea Billings. Description: Jenny McLelland, a white woman with chin-length blond hair holds a microphone. She’s seated in front of a navy blue backdrop with the Care Can’t Wait logo on it. She wears eyeglasses with bright pink frames, a white suit jacket and a turquoise Little Lobbyists t-shirt.

Jenny Mclelland offered her thoughts in the second panel, “Community Integration Makes Our Homes and Communities Thrive.” Jenny is Little Lobbyists’ Policy Director for Home and Community-Based Services (HCBS). 

Jenny spoke movingly about the power of Medicaid to keep our disabled loved ones in their community, noting that her son James had had to spend his first year of life in an institution before coming home on one of California’s HCBS waivers, “Medicaid is the glue that holds our family together.” Explaining that “50 different states have 50 different sets of rules,” Jenny advocated for ending waiting lists nationwide.

Little Lobbyists’ Communications Director Laura LeBrun Hatcher moderated the fourth panel, “Centering Disability in Storytelling in the Media, Pop Culture and in Narrative Change.” Laura emphasized the need to hear directly from disabled people when news outlets and others report on disability issues. Among the panelists were Rico and Isra’El Winston, Little Lobbyists members.

Rico introduced his son Isra’El, who is Autistic, emphasizing that he had found his life calling and purpose on his journey with his son: “I want everyone to look around … behind every beautiful face [here] is a compelling story waiting to be shared and needing to be told.” He then described the numerous media projects he and Isra’El had worked on, including films, comic books, and television programs, all of which centered disability as a force for change.

Photo credit: Tirrea Billings. Description: Laura Hatcher (white woman with long brown hair), Rico Winston (Black man with short hair and a mustache) and Isra’El Winston (young Black man with a short cut with a fade) sit in front of the navy blue Care Can’t Wait backdrop. They are all wearing jeans and dark blue Little Lobbyists t-shirts.

Isra’El, 14 years old, spoke at length about his advocacy journey, noting that his dad is “always by my side, showing me that I am important, amazing and loved. With his support and love I’ve learned that caring for and respecting each other is how we can change the world.” 

When asked what he’d like other children to know about advocacy, Isra’El responded, “I want kids to know that they can stand up for themselves and others. I have learned to express my feelings and to do my best to overcome my fears and that we can stand together to support each other, lift each other, and empower each other.”

Our families had tons of fun, too, at all the events! Advocacy can be challenging, but let’s not forget that advocacy is filled with joy!

Enjoy the slideshow! Click on the large photo below to advance the slideshow.

Rico & Isra'El Winston speak at the summit. A Care Can't Wait backdrop is behind them, and they are seated, wearing primary blue Little Lobbyists t-shirts. Photo credit: Tirrea Billings

Group photo of seven Little Lobbyists parents, all wearing LL t-shirts, on the rooftop plaza of the MLK, Jr., Library, with advocate Matthew Cortland. The skyline of Washington, DC, is behind them. Photo credit: Tirrea Billings

Little Lobbyist Simon, wearing a blue LL t-shirt and holding a notebook with the LL logo, poses on the rooftop plaza of the library.

Large group photo of disability activists, Little Lobbyists parents and children, some standing, some using wheelchairs, on the rooftop plaza. Behind them is the city skyline, a bank of heavy clouds, and a rainbow.

Little Lobbyists James and Louisa with LL parent Andrea. They are at the summit at a large table working on a beading project. Andrea is wearing a face mask. Photo credit: Rah Studios

Little Lobbyists Ali and Ethan wear dark blue and turquoise LL t-shirts, respectively. They pose on the rooftop plaza of the library. Visible behind them is the city skyline, decorative foliage in a planter, and a roof overhang. Photo credit: Rah Studios

Little Lobbyists Roger, Jeneva and Rob pose inside the conference area in the MLK library. Rob is using a wheelchair and his vest is covered with disability advocacy pins. He is holding his AAC communication switches. Photo credit: Rah Studios

Little Lobbyists Danielle and Destiny pose with friends. Both moms and their toddler daughters wear LL t-shirts. They are inside the conference area at the library. Photo credit: Rah Studios

Little Lobbyists Victoria and Cole sit outside on the library rooftop plaza. Victoria has her arms around Cole, who leans into her. They wear LL t-shirts and the city skyline is behind them. Photo credit: Rah Studios

Little Lobbyists Teddy and Sanghee sit on a long bench inside the library, with plate glass windows behind them showing the plaza and buildings. They are wearing LL t-shirts. Photo credit: Rah Studios

Little Lobbyists Victoria and Meghann pose with their arms around each other. They wear LL t-shirts and a Care Can't Wait banner is behind them. Photo credit: Rah Studios

Little Lobbyist Adonise poses on a DC city street with both arms raised high. Behind him, in the distance, is the U.S. Capitol building. Adonise wears a turquoise LL t-shirt and brown pants.

Little Lobbyists Ali and Ethan pose in the Old Executive Office building in front of a wall with the White House logo (blue & white oval) above them and a U.S. flag to the left. Ali wears a long skirt and Ethan is dressed more casually.

Adonise wearing a sharp, tailored suit coat, poses in a hallway in the OEB, with a White House logo to his right on a wall.

Isra'El wears a tailored suit coat and pants, with a white button-down shirt. He stands in a stairwell in the OEB, his hand on a decorative metal railing. The 19th century columns and other architectural features of the historic building are behind him.

Isra'El poses--a small figure--under the giant mural at the MLK Jr Library. The mural depicts colorful scenes from the life of Martin Luther King, Jr.

Sanghee poses with her sons Teddy and Leo in the OEB. A decorative flag is to the right. Teddy sits on a rug that partially covers a black and white tiled floor. He looks up at a decorative light fixture. Framed photos of President Biden and Vice President Harris are on the wall behind them.

Adonise sits in a chair in the conference area of the library. Behind him is a banner with the Care Can't Wait logo and the summit title, "Disability Integration Makes Our Lives and Communities Whole." An electronic board is to the right, giving the name and speakers for one of the panels.

Adonise and his mom Anne are seated in a presentation room in the OEB. Disability advocate Haban Girwin is seated next to them. Anne wears a vivid red dress and Adonise wears a suit.

Ethan, James and Louisa, wearing turquoise LL t-shirts, pose on the library's rooftop plaza, under an overhang, with plateglass windows behind them.

Olivia poses with Destiny and others inside the conference area of the library. All are seated on the tiled floor and framed artwork hangs behind them on the walls.

Teddy and Destiny play with a bright red Elmo doll on the concrete flagstones of the library's outdoor plaza. They are smiling and laughing.

Little Lobbyists Danielle and Destiny pose in front of a framed abstract painting inside the library's conference center. They are wearing LL t-shirts and smiling. Danielle is hold Destiny, who has her arms around her mom's neck. Photo credit: Rah Studios

Elena and Xiomara pose in front of an elaborately wood-paneled wall (different shades of narrow wood paneling in long vertical stripes) at the MLK Jr. Library. They wear turquoise LL shirts. Elena bends down to hug Xiomara, who is seated in her wheelchair and wears a rainbow-colored skirt. Xiomara has her arms around her mom's waist. Photo credit: Rah Studios

One of our Little Lobbyists, ready to lead a discussion on community! Image description: A young Black boy with a tracheostomy and a big smile wears a Little Lobbyists t-shirt and sits in a meeting room chair in front of a large banner that reads “Disability Integration Makes Our Lives and Communities Whole.” At the top of the banner is the Care Coalition logo, a corona around the words “Care Can’t Wait.” To the right of the boy is an electronic sign displaying the topic of the next panel and the speakers on it.

Did you know that the Civil Rights Act of 1964 does not ensure civil rights for people with disabilities? The Act “outlaws discrimination based on race, color, religion, sex and national origin.” The Civil Rights Act does not outlaw discrimination based on disability.  

So how then are people with disabilities protected from discrimination and ensured civil rights? It’s complicated, consisting of a set of regulations, a law, and a court decision:

• Section 504 of the Rehabilitation Act of 1973 protects disabled people from discrimination in any program that receives federal funding, which includes Medicaid, other health services, public education, housing, transportation, and the workforce;

• The Americans with Disabilities Act of 1990 protects disabled people from discrimination more broadly, including public settings and situations outside federally funded programs; and

• The Supreme Court’s 1999 decision in Olmstead v. Lois Curtis upholds the right of people with disabilities to receive Medicaid services in their communities, if a set of conditions are met. 

Disabled people face discrimination on many fronts: jobs, education, housing, physical accessibility, and a variety of health services, among others. However, the key right, the one that unlocks all the others, is the right to community integration. Without the right to live in the community of your choice, people with disabilities would still be locked away in institutions. 

What Is the Community Integration Mandate?

The Integration Mandate is the key to civil rights for disabled people. First appearing in the Section 504 regulations, it is codified (established in law) in the ADA. The Olmstead decision upholds it. You can find it in the ADA under Title II, which is based on the 504 regulations that apply to the Department of Health and Human Services. This is the key sentence in the 504 regulations: “A recipient [of federal funds] shall administer a program or activity in the most integrated setting appropriate to the needs of a qualified person with a disability.” 

Note that the word “needs” is not restricted; it may apply to medical, social and/or other needs. You can read the entire Integration section of the 504 regulations here. 

The Integration Mandate protects the right of people with disabilities to receive their Medicaid benefits in their community of choice. These Medicaid benefits include Home and Community-Based Services (HCBS), which may include medical and rehabilitative services, assistance with activities of daily living (ADLs) from home care workers, private duty nursing services (PDN), transportation services, home modifications, and much more. 

Why Are Disabled People Still Fighting to Live in Their Communities?

When Medicaid was established in the Social Security Act of 1965, it guaranteed (or entitled) health care services for low-income persons and people with disabilities. However, people with disabilities were only entitled to receive the care many needed in an institutional setting. Nursing homes and Intermediate Care Facilities are institutional settings where disabled people receive care but are kept segregated from the community. 

Disability advocates fought long and hard to require Medicaid to provide services in the community. The result is HCBS waivers. The problem with these waivers is that they are still “optional” for states–Medicaid’s “institutional bias” is still part of federal law. 

Photo Credit: Rah Studios. Image: Just some of our nationwide Little Lobbyists family at the Care Coalition’s Community Integration Summit in Washington DC! Image description: A couple dozen children of various ages and their parents pose in front of a tan and black paneled wall at the Martin Luther King, Jr. Library in downtown Washington, DC. Most of the group members wear t-shirts with the Little Lobbyists logo.

As a result of ongoing advocacy by the disability community, all 50 states now have HCBS waivers that serve both children and adults, although the terms of each state’s waivers vary tremendously. That’s because Medicaid is a federal/state matching program, and each state is allowed to develop its own terms and conditions:

• Type of disability or disabilities served;

• Age of the person with disabilities;

• Number of slots available for services;

• Length of waiting lists for services;

• Benefits offered from the allowable list of services maintained by the federal government’s Center for Medicare and Medicaid Services. 

As a result, just because you or your loved one receives HCBS benefits in Massachusetts, it doesn’t mean you understand what others receive in California or why. The sad reality is that what constitutes appropriate “community integration” is still a matter of legal interpretation. 

Is There Any Good News?

Yes! As of July 8, 2024, the updated 504 regulations for the U.S. Department of Health and Human Services went into effect, thanks to the Biden Administration. Section 504 has not been updated since the late 1970s, when the regulations were first written. As a result, provision of the ADA, Olmstead, and other laws and court decisions have finally been incorporated into the integration mandate, clarifying and strengthening it. You can read the entire 504 Integration section, which describes how states might be violating you or your loved ones’ rights:

• Definition of a segregated setting;

• What counts as discrimination in the provision of benefits and services by states;

• Definition of “risk of institutionalization.”

In addition, the attached guidance to the updated 504 regulations clearly states: “Compliance with Medicaid requirements does not necessarily mean a recipient [e.g., a state] has met the obligations of section 504.” This means that a state cannot claim that because CMS approved their HCBS plan, they are not discriminating against people with disabilities or a subpopulation of disabled people. 

If you feel your civil rights have been violated under section 504, you may file a complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services. The Secretary of Health, Xavier Becerra, and the Biden Administration are committed to ensuring the civil rights of disabled people. 

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Jeneva Stone is the blog manager for Little Lobbyists, and mom to Rob Stone.

Jenny McLelland (l) wearing a pink suit, James McLelland (c) wearing a dark suit, and Alison Barkoff, ACL Administrator & Asst Sec for Aging, stand in a sandstone hall at the Justice Dept in DC.

Today, June 22, 2024, marks the 25th anniversary of the U.S. Supreme Court’s landmark case, Olmstead vs. L.C., which affirms the right of disabled people to use their state Medicaid benefits to live in their communities, rather than in institutions. The suit was brought by Lois Curtis and Elaine Wilson against the State of Georgia, where Tommy Olmstead was the Commissioner of the Department of Human Resources.

Little Lobbyist James McLelland and his mom Jenny were invited to the U.S. Justice Department’s celebration of the Olmstead Decision to share their story. Like James, all of our disabled loved ones belong in their communities, with their friends and families. 

The McLelland Olmstead Story

James: Hi! My name is James McLelland. I’m here today with my mom Jenny. My dad Justin and sister Josie are in the audience.  

I’m a part of Little Lobbyists – a group that advocates for medically complex children (like me). 

I am 13 years old and I live in Clovis, California. I just finished 7th grade. I play  percussion in the school band. I can run a mile in 7 minutes 35 seconds. I’m fast. I’m a straight-A student too. I’m also disabled. 

I know, I’m a real Renaissance kid. 

I’m proud to be disabled. It’s part of who I am. 

I have a tracheostomy. That’s the tube in my neck, it helps me breathe. Olmstead means I have a nurse that goes to school with me to make sure I keep breathing while I’m in class. I use a ventilator at night—that’s a machine that breathes for me—because I don’t breathe when I’m asleep. Olmstead means I have a nurse who comes to  my house at night to manage the ventilator. If I roll over and the tubes disconnect, he reconnects everything to keep me breathing.  

Being disabled means that I have to rely on other people-–it’s okay to rely on other people for care. 

I’m here today because I’m an Olmstead success story—I’m getting the care I need to live my life the way I want to live it. I want to make sure that other disabled people have the same access to the community that I do.

James reacts with enthusiasm to a signed photo of President Joe Biden he was given.

Jenny: Olmstead is what makes our family work. Olmstead means James can get the nursing care he needs to live safely at home with our family, attend school, and have a life. Today, James is an Olmstead success stor -–but that wasn’t always the case. 

James spent most of the first year of his life in an institution. Institutionalization of children is not a thing of the past. It happened to our family, and it is still happening to medically complex kids just like James.  

The doctors at the hospital where James was born didn’t give us the option to bring him home. They said if we brought him home he would die and it would be our fault. They said that even if he lived, his needs would be so overwhelming that our family would fall apart. 

They didn’t mention Olmstead. 

They didn’t tell us that Medicaid would pay for nursing care at home. 

They told us to trust the system-–and the system was a pediatric subacute facility—an institution–200 miles from our home.  

Putting James in the facility is the greatest regret of my life. 

For a child with a tracheostomy, the biggest medical concern is keeping the airway open. But a baby crying isn’t a medical problem-–it’s just a thing that babies do. 

You don’t solve the problem of a baby crying by suctioning away the secretions–you solve the problem by picking the baby up. In the facility, there was never enough staff to pick the crying babies up. If we weren’t at the facility, James would cry alone in his crib for hours. He would cry so long that he vomited, and he would lay in the vomit for long enough to burn his skin. 

Institutional care provided 24/7 nursing. It met his medical care needs-–but it neglected his most basic human needs. 

Olmstead advocacy is personal for me. I don’t want what happened to our family to happen to anyone else. As James grows into adulthood, I don’t want him to have to sacrifice his independence and live in a segregated facility to access care.  

James (c) and Jeni (r) are seated at a long table with a royal blue cover, with a moderator to the left. They are on a stage in the Great Hall of the U.S. Department of Justice. Behind them is an American flag, a Justice Department flag, and a Health and Human Services flag. Above these is the U.S. Department of Justice seal with an eagle. On the far left is a large silver metal statue of Lady Justice, wearing a toga and holding up both arms.

How Could Olmstead Be Improved?

Jenny: Today, James is an Olmstead success story. He has access to Medicaid. We live in California, a state that pays parents and family caregivers in addition to paying nurses to handle complex medical care.  

We’re able to be here today because Olmstead keeps our family together.

Olmstead means disabled people–like my son–have a civil right to access care in their own homes. Unless they can’t, because the program in their state has a waitlist. 

Wait … civil rights can have waitlists? 

Our life works because James has access to nursing care at home through a Medicaid Home and Community-Based Services (HCBS) waiver program. 

There are disabled children and adults just like my son who can’t access care at home because they’re stuck on waitlists, sometimes for years. 

What’s even worse? Every state has its own set of rules on who can qualify for HCBS waivers. That means some disabled people are locked out of getting care at home because their needs don’t check the right boxes in their state. 

We’re a middle class family—my husband is a teacher and I’m a retired, injured police officer. In California, James qualifies for an HCBS waiver that provides Medicaid. If we ever moved, James would lose it.

Even when disabled people have access to HCBS waivers, low Medicaid reimbursement rates make it difficult to actually find nurses and caregivers. Most personal attendant caregivers make minimum wage or close to it. 

The dignity of disabled people living at home and the dignity of care workers are two sides of the same coin. 

The new federal rules that will require 80 percent of Medicaid dollars to go to the front line workers who are actually providing care is a great start. But we can’t fulfill the promise of Olmstead unless we make sure the Medicaid reimbursement rates are enough to pay caregivers and nurses a living wage. 

When my son lived in institutional care, the system paid more than half a million dollars a year-–no questions asked. Providing him with nursing care at home is dramatically cheaper, but the system isn’t set up to make home care easy. 

Disabled people who want to live at home have to figure out confusing paperwork, navigate a complicated system, and find their own caregivers to make life at home work.  

Olmstead makes life work for disabled people, but we can make Olmstead work better.

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James and Jenny McLelland are members of Little Lobbyists. Jenny is Little Lobbyists’ Policy Director for Home and Community-Based Services.

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.

The cover of Kelley’s book, white and blue lettering on a bright green color gradient. To the right is a color photo of Kelley, a white woman with red hair who wears glasses and poses with her arms folded over a stack of books.

Kelley Coleman is the mom to two amazing boys, one of whom has multiple disabilities (including an as-yet-undiagnosed genetic syndrome, cerebral palsy, autism, CVI, epilepsy, and more). Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports stems from her own experience, giving parents the tools to spend less time navigating stuff and more time loving their kids exactly as they are. 

This honest and relatable book is a roadmap to parenting a disabled child, covering all the essential topics we struggle with: diagnosis, school, doctors, insurance, financial planning, disability rights, and life as a parent caregiver. And there are templates you can use! And tons of links to resources in the appendix!

Kelley’s empathy shines through, page after page. As a reader, I never felt that she was telling me how I should be doing anything. Rather, her voice was like the spirit guide to parenting I’ve always wanted, telling me how I could do all the hard things, making suggestions and holding my hand. After 20+ years as a parent-caregiver, I still don’t know what I’m doing half the time, but I keep trying. And that’s one of Kelley’s messages to our community–keep going, try and fail, and try again. You can do it.

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Black & white photo of a younger Kelley and her infant son Aaron. Their faces are in profile. She is kissing his forehead.

JS: Clearly, this book arose from your personal experiences struggling with the system, but was there a particular "aha!" moment when you realized, I have to write a book?

KC: I think all parents of kids with disabilities have been told we should write a book. I never thought I would write a book about how to do all of the stuff - it just sounded so boring. But, after a long night with Aaron having medical issues and none of us getting much sleep, I hit a wall. I realized that the only way we got through everything was by knowing how to do all of the stuff. That day, I realized that I needed to write the book. I wanted everyone to have access to the information of how to tackle the paperwork and the planning - the stuff that we all have to learn from the ground up, and that our kids depend on, and that is just so overwhelming. I realized right away that it was the opposite of boring - it’s life-changing. 

JS: One of the things I loved about this book was your honesty: that you're still learning. Of all the topics you covered, in which area, personally, do you feel you're succeeding right now? In which do you struggle the most?

KC: Because I’m still learning every day, that answer will change every day. Today I feel like I’m succeeding with the social services piece. I just sent in our annual mountain of paperwork, and have found ways for our social service system to spend less money getting better supports for my son. That feels great. And, where am I struggling the most? The disability rights and advocacy piece is still a big learning curve for me. I’m always working on the balance between being my son’s advocate and teaching him to advocate for himself. His communication is emerging, and I find that I need to take more time to follow his lead and to build self advocacy into every part of his life. It would often be faster for me to power through, but then I’m not teaching him. The more I slow down, the more he teaches me. 

JS: You emphasize the joy of raising disabled children, which is so wonderful! If books are surrogate children, as some say they are, writing which part of the book gave you the most joy?

Aaron, who wears glasses and has a medal on a ribbon around his neck, raises his hands up in triumph. He is in a classroom with a screen behind him that shows gold confetti.

KC: Writing a book - just like raising a child - is all the things. So much joy - and also every bit of the ups and downs that bring you to that joy. Connecting with leaders in the disability community was an amazing highlight. These are people I’ve looked up to for years, and when they said yes to being interviewed, I was humbled and appreciative. If Judy Heumann invites you to her house, you say yes. I was so fortunate to be able to spend time with her in person before she passed. 

JS: What are the three main takeaways you'd like families to absorb from this book? 

KC: It’s hard to choose three. But since you asked: 

1. Learn about disability from disabled people. It shouldn’t be revolutionary to seek firsthand experience, but too often we forget that piece. When we learn from disabled people, we connect to a community and find role models to follow. 

2. Caregiving is a job. All of this paperwork and planning may never be fun. You get better at it. You set up systems. And that allows you the space to be a parent, to enjoy your child, and to separate the mountains of paperwork from the fun of parenting. 

3. Connect with other parents in this situation. We need to stop reinventing the same wheels. Chances are someone has done this before and can show you a better way. And, when you learn a better way, share that with everyone you know. We’re in this together. 

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Kelley Coleman is a feature film development executive turned author and advocate for individuals with disabilities and parent caregivers. She serves on committees for Children’s Hospital Los Angeles, the Los Angeles Unified School District, and Canine Companions. She lives in Los Angeles with her husband, two boys, and her son’s trusty service dog. Learn more about Kelley by visiting her website and following her on Instagram and Facebook.

Aaron, wearing a college graduation cap and gown with a colorful sash, stands in front of the brick Beloit College sign. A college quad with trees is in the background.

Tell Congress people with disabilities shouldn’t be forced to pay the U.S. debt! 

The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.

I just turned 23. I am a graduate of Beloit College, where I majored in Sociology and minored in Political Science. I plan to begin a Master's in Sociology this fall and hope to do research in the Sociology of Sports and inclusion of people with disabilities. 

I competed on the track and cross country teams for Beloit; this was after being a 3-sport 4-year athlete in high school (cross country, swim, and track). I was able to participate in all these sports and activities in part due to the provisions of the IDEA and also because I had a tremendous school athletic director and coaches. I plan to get my Master’s degree in hopes of making sure every child with disabilities is able to access extracurricular activities at their school and be part of their teams.

I had a diffuse and catastrophic birth brain injury, which resulted in my disabilities. I have received the diagnoses of cerebral palsy (tetraplegia) and epilepsy. I take expensive seizure medications to maintain my health; my family’s insurance helps me to afford them, but the landscape is continually changing in terms of generic vs. name brand medications and affordability. I also receive care from both a neurologist/epileptologist and a physiatrist, along with my basic medical care.

Aaron competing in cross country. He’s wearing a team running outfit and is crossing a small stream in a wooded area.

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that have affected you? How would it affect others today?

Because of IDEA, I was able to access both academic and extracurricular supports which allowed me to be successful and SAFE during the school years. I was able to receive support from a seizure-trained paraprofessional and to have coaching and participate on teams where all my medical accommodations were respected and honored. Cuts to the IDEA would really jeopardize the opportunities I had for young people today trying to receive an education and be part of their communities.

Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have  introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.

Ethan speaking in a microphone at his church. He’s standing with the assistance of a gait trainer.

Tell Congress kids with disabilities shouldn’t be forced to pay the U.S. debt! 

The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.

Ethan is 14 years old and will start high school next fall. He loves to sing at church and with his local community choir. He also participates in therapeutic horseback riding and is a member of his church youth group. This month, he will become a commissioned member of our church. Ethan also loves music and taught himself how to play ukulele during the lockdown. He dabbles with the guitar and piano. 

Ethan volunteers with social programs within the community and knows that giving back is so important. He has worked with programs at our church to support the homeless community, and to feed and cloth refugees new to our community.

Ethan was born with congenital myasthenia  syndrome, which affects the communication between his brain and muscles, leading him to have low muscle tone. He also had dislocated and subluxated  hips, so he uses a wheelchair for long distance and for greater independence. In addition, his diaphragm had to be placated so that his lungs had room to develop. As a result of this, he has a tracheotomy and uses mechanical ventilation at night.  

While we’re grateful the Biden Administration successfully protected Medicaid from being cut, it is already deeply underfunded. At least a million people are already on waiting lists for Home and Community-Based Services (HCBS), medical costs continue to rise, and care for our families could be compromised. How would that affect Ethan?

Through Medicaid, Ethan has weekly physical and occupational therapies to improve range of motion, which helps him to be more independent. He’s also able to see a variety of specialists at UVA Children’s Hospital because Medicaid picks up their co-pays. In addition, Medicaid pays for Ethan’s respiratory supplies, as well as his power wheelchair so he can be independent at school, engage with his peers, and participate in events like his 8th grade school dance and church youth services.

Without Medicaid, we would have to prioritize what parts of Ethan’s life are most important. Because of Medicaid, we can focus on Ethan’s whole self, not just the parts most in need of help.  

Ethan’s monthly medical bills exceed what his father and I make as a teacher and social worker. Without Medicaid, our family would quickly become homeless because we would be paying thousands of dollars a month for things our private insurance doesn’t cover. We would have to choose shelter and food for all of us, or health care for my son. He might end up in the care of the state because we would be unable to meet his medical needs. Our lives would be shattered. Ethan is my heart, and he is loved by so many within his church community who have been inspired by his will and determination. 

Ethan riding a horse during equestrian therapy—he’s accompanied by three aides, who are leading the horse around an outdoor paddock with a clapboard fence in the background.

Medicaid has helped Ethan live his best life, and now it’s his job to help others live a better life. With his small contributions, he is doing similar good for others. 

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that affect Ethan?

Ethan has an Individualized Education Plan (IEP) that enables him to receive services like a scribe for long writing assignments and breaks due to the fatigue he deals with as a result of his muscles. Additionally, the school provides transportation on a school bus with a wheelchair lift, so he can have his power chair at school to be independent.  

Medicaid pays for a private duty nurse so Ethan can attend school. Without access to private duty nursing, my son would lose his ability to attend school, and either my husband or I would have to leave our jobs as a social worker and teacher. Ethan would not receive the education that he will need to take his place in society. 

Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have  introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.

Tell Congress kids with disabilities shouldn’t be forced to pay the U.S. debt! 

Image Description: Miles, is seated in an adapted chair in his school classroom, holds a hand-drawn poster of an alligator with the title, “See You Later Alligator!", which is signed by various persons at the school. There’s a bulletin board and balloons behind him. Miles is smiling and he wears eyeglasses.

In exchange for raising the debt ceiling, Republican leaders are demanding extreme cuts to essential programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.

Miles is finishing up 2nd grade. He loves music, especially theme songs! If there’s a device nearby with access to the internet, Miles will find his favorite videos on YouTube before you can say “hey … where did my phone go?” Miles can’t speak by mouth yet, but says a whole lot with just his eyebrows. He is also learning to use a “talker” (AAC device) to communicate even more. He has two brothers he loves very much, and no one can make him laugh like his Daddy. Miles loves cuddling with his Mom and getting her to sing along to his favorite songs. 

Miles has a rare skeletal dysplasia that comes with a lot of complex medical issues. Up until last year, he needed a breathing tube and ventilator. He still gets all his food and drink through his feeding tube. His complex GI issues cause chronic belly distention that requires a lot of hands-on skilled care throughout the day, so Miles can keep moving! He doesn’t stand or walk independently yet, but is learning how! 

The Congressional Budget Office (CBO) estimated the Republican debt ceiling bill would cut Federal Medicaid funds by kicking 1.5 million people off their health coverage annually. It would also increase the amount states pay for Medicaid by $6.5 billion per year. Experts predict that many states would end Medicaid coverage as a result. How would that affect Miles?

Miles is able to live safely at home with his family and attend a public school with his friends and brothers thanks to Medicaid. We have “good health insurance” from our employers, but it does not cover even half the things Miles needs. His life in the community is possible because Medicaid gives him access to the specialized doctors, medical equipment, and services he needs to not just live, but thrive. 

Medicaid provides private duty nursing to make sure he has hands-on skilled care to attend school and be cared for while we are working and handling other life responsibilities, or just being Mom and Dad to all three of our kids. Our employer-based insurance does not cover this service. The (covered) alternative is Miles living in a skilled-nursing facility away from his home and family, and not receiving the nurturing care he deserves to live his life the way he should. 

Medicaid has given Miles access to the Skeletal Dysplasia Clinic at an out-of-state hospital whose doctors have guided his unique, complex medical care since before he was born. Their expertise not only saved Miles’ life on multiple occasions, it also increased his quality of life. Without Medicaid, our silly, strong, incredible Mr. Miles would not have access to the care and services he needs–the care that has allowed him to become the dynamic little boy he is and will allow him to develop into whoever he is meant to be.

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Despite the fact that the Federal government pays only 16% of IDEA costs, Republicans want to cut an additional $31 billion over the next decade. This year alone, our kids would lose $3.1 billion, equivalent to firing 48,000 special education teachers and inclusion personnel, affecting 7.5 million students with disabilities. How would that affect Miles?

Image description: A close-up of Miles in his family’s home. He’s smiling and he’s definitely “talking” with those eyebrows!

Miles goes to the same school as his brothers. He is very popular and has taught a lot of other kids–and educators–about the importance of accessibility and inclusion. Miles’ access to school is dependent on robust funding to allow his teachers and administrators to create an environment that Miles can access meaningfully! His teachers have specialized training and use endless tools and resources to adjust to the unique ways Miles can do things. 

Without specialized seating, adaptive equipment, walkers, physical therapy, occupational therapy, his AAC device (talker!) and speech therapy services, Miles would not be included in a mainstream school with his peers. His learning and his physical, social, and emotional development would all suffer without services provided through IDEA.

Republicans claim they need to cut these programs to cover the U.S. deficit, but that’s just not true. As House Republicans voted to cut our kids’ health care and education, they also introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

It seems like Congressional Republicans want our kids with disabilities to cover the U.S. debt to pay for the cost of their tax cuts to the ultra rich. We can’t let them get away with that.

This is the feeding system G- and J-tube users have relied on for decades. Note how the white nozzle fits snugly into the extension set. [image description: A MOOG feeding bag (with aqua and purple features) is connected to an extension set.]

“Hey there”, my email to our enteral supplier began in as friendly a tone as I could muster, “We received my son’s tube-feeding supplies and after his home health aide went to hang one of the  bags, she realized that the wrong feeding bags were sent. We usually get INF0500-A (with nozzle). This time we received INF0500-E (without nozzle). We tried one of the INF0500-E to see if we could get it to work without the nozzle but it leaked into his bed. Can we please get the correct bags sent as soon as possible?”

The response came quickly, informing me that the manufacturer is no longer making the INF0500-A, the product we have used for over a decade when my son had surgery to place a gastrostomy tube and we learned a whole new vocabulary:

In this photo, the white nozzle is removed from the purple ENFit tip. The old-style extension set does not have a matching screw-in end. If the purple end is plugged into the extension, fluid leaks around the gaps in the threads, which do not correspond with the grips on the extension set. [image description: the same feeding system, but with the white nozzle removed.]

• A gastrostomy tube (aka, ‘g-tube’ or ‘peg’) is the plastic button inserted in the stomach through a surgical opening called a stoma. Because my son cannot swallow liquids safely, this is how he drinks water and takes medication–just like thousands of other disabled people. For several years my son took all his nutrition via this tube, just like many people who cannot swallow safely at all; this was how he ate. 

• Extension sets are tubes that connect the ‘peg’ to the syringes or feeding bags used to give medication, food, and water.  

• Enteral means anything that passes through the intestines. We get all the above items through an enteral supplier. 

• I’d thought there was just an issue with the feeding bags, but then the supplier threw me another curve ball, saying that the new extension sets sent with our last shipment were compatible with the new bags. 

What new extension sets? I wondered. I asked my son’s home health aide. She said there were some unfamiliar supplies she had put away and showed me the new purple-adorned extension sets that connect the gastrostomy tube to the new purple-adorned feeding bags. The lovely purple ends on each screw into one another. However, the medication syringes we have available do not have these purple screw connectors and once we run out of our stock of the old extension sets, I will not be able to give my son medication.  

This new system is called “ENFit” and as much as my son and I like the snazzy purple, we now have lots of 60cc and 10cc syringes that are not compatible with it. I asked our supplier if I could get more of our original extension sets, but, apparently, they have been discontinued, too. “Oh,” I snapped, “Was anyone going to tell the people who actually use these supplies?” 

Realizing that I might soon be unable to give my son the medications that we use over fifteen syringes for each day, I asked, “Can we get medication syringes that work with this new system?”  The supplier said syringes are the responsibility of  pharmacies, not enteral suppliers. I asked why the change was happening so suddenly and without notice, given the vital importance of these supplies. 

The new ENFit extension set is pictured. Because the standard syringe is not designed with a screw-in end, the syringe cannot be connected. Sandra’s family cannot locate any of the ENFit-compatible syringes. [image description: A pair of hands with aqua nail polish holds a standard medical syringe, demonstrating that it cannot fit an ENFit extension set, which has a purple end.]

Minutes later I received an email from the supplier with a link to a Businesswire website wherein the Global Enteral Device Supplier Association (who knew there was such a thing?) declared their support for ENFit on behalf of patient safety, noting that the change was “supported by clinicians, regulatory agencies, patient safety organizations, Group Purchasing Organizations (GPOs), Durable Medical Equipment providers (DMEs), manufacturers and suppliers.” Now that the ENFit parts screw into each other, there is less chance for accidents, spillage, and medication errors. 

This is a standard slip-tip syringe fitted snugly into the port of an old-style extension set. [image description: a 10 cc medical syringe is connected to a feeding extension set.]

Sounds great! But one group in that long list of supporters is missing: gastrostomy tube users themselves. What are disabled people and their families supposed to do during this mismanaged and incomplete transition?

I called our local pharmacy. Staff told me their suppliers do not carry the purple ENFit products and, in any event, they are on backorder. I called our specialty pharmacy who directed me to the pediatrician. The pediatrician’s office is trying to locate these syringes, but staff are telling me they are hard to find. 

In the midst of this mess, the group chat for my tube-feeding support group lit up. “They switched us. Halfway. Brilliant,” one texted. “I have the new syringes if you need some,” offered another. “How did you get them?” I asked. “The supplier sent them, but I had to ask. Our supplier also did it without much notice or a real transition plan,” was the reply. 

For now, my family is switching back and forth between the old parts and the new parts (literally connecting and disconnecting two different extension sets to the tube in my son’s body) as we give him medication or water, depending on which syringes or bags we do or don’t have. We’re spending down the last of our precious non-purple extension sets, using them past their typical expiration, while we figure out how to get the ENFit syringes without privately paying every month for boxes of supplies that our insurance policy covers.

This unnecessary scramble could have been avoided if the Global Enteral Device Supplier Association (Twitter handle @GEDSA_org) had involved g-tube users and their families from the beginning in the ENFit transition, instead of relying on the “expertise” of executives at manufacturers, hospitals, and facilities. People who live day-to-day with gastrostomy tubes understand ALL of the consequences of a switch in supplies, including the interdependencies of compatible tubes, pumps, bags, extension sets, and syringes. Until the disability community and caregivers are centered in these decision-making processes, we will continue to scramble, urgently and reactively, to the missteps of the industries we rely on. 

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Sandra Joy Stein is a writer and educator who lives in New York. Her son gave permission to tell this story, but did not want his name or photo in this piece. 

Grace Dow (r) with her young sister (l) at Grace’s high school graduation party. Grace wears a red shirt and is using an adaptive walker, and her sister a blue shirt. Both women have dark skin and dark hair. They are in a room set up for a party with red and blue balloons and tables covered with white table cloths.

Adulthood is a challenging time for most young adults and their families. For adults with disabilities and their parents, it’s extra challenging. As an adult with Cerebral Palsy, adulthood has been more challenging than I’d imagined. Luckily, my parents have been supportive. I am lucky to have a large, extended family as well.

My parents made sure that I knew what Cerebral Palsy was when I was young. I knew that I was different from most of my peers when I was growing up. An emphasis was always put on my strengths, and while this was helpful, I wish that I'd had a better understanding of how Cerebral Palsy would affect everyday life. It is essential to let your child know that they may have challenges and limitations as well. I was unaware of how my disability would affect adult milestones such as employment and marriage.

When I was young, I played baseball through a program called Buddy Baseball. I liked being around other people with disabilities. I also played sled hockey as a teenager. I met people with various disabilities through sports. Massachusetts has ample recreation opportunities available for disabled people. I felt like I belonged while playing sports. 

As I grew up, though, I had lots of questions about my future. I knew that I wanted to have a career. I wanted to live on my own one day. I even hoped to get married. I had goals, but had no idea how to achieve them. My parents encouraged me to follow my dreams. They helped me explore different careers, and what I might be interested in doing in the future. In my senior year of high school, I began working with my local vocational rehabilitation office. Unfortunately, their services didn't work well for me. High staff turnover led to me working with three different counslers, and it was difficult to get in touch with them.  Figuring out what kind of career I want to pursue has been a challenge. Since last year, I've run a blog where I write about my experiences as someone with Cerebral Palsy. I eventually want to make writing my full-time job. Writing is one of my passions in life.

Grace Dow (l) and her best friend (r) are seated next to a table with a display about adaptive sports. The trip-fold display has many photos and descriptive text boxes on it. Grace is wearing a white button-down shirt and has dark skin and dark hair. Her friend is wearing glasses, a winter hat and coat and has light skin and light hair.

One of the most important things my parents have done since I have become an adult is help me navigate life as a disabled adult. I knew very little about independent living and what it would look like. My parents made me aware of resources such as the local independent living center. I also received a laptop computer through United Cerebral Palsy. I moved out two years ago, and my parents were nervous. They provided many of the furnishings and other equipment for my apartment which included a bath bench, an electric bed, and a new dresser.

For me, figuring out healthcare has been difficult. I received a new power wheelchair last year, and it was a complicated process that took over a year. My parents helped throughout the process, but they didn’t do the work for me. They helped me write an appeal to my private insurance company and fundraise for the seat elevator. Before turning 18, my parents did all of the advocacy on my behalf. They wrote letters and made phone calls to insurance companies. Back then, I was glad that I didn’t have to figure it out on my own.

My parent's role in my life has changed since I became an adult. They are now supporting me rather than doing things for me. I am fortunate to have two parents who have always been loving and supportive.

The transition to adulthood is a challenging time for everyone. It is even more difficult when your child has a disability. With support, adults with disabilities can live their lives to the fullest.

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Grace Dow is a writer and advocate for those with disabilities. She lives in Massachusetts. In her free time, Grace enjoys reading, watching movies, and being with her friends and family. Please visit Grace’s blog!

L to R, Julie Beckett, Nora Wells (Exec Dir of Family Voices) and Elena Hung. [image description: Three women wearing professional clothing and wearing name tags pose at a conference.]

Little Lobbyists honors the passing of an advocate who changed our children’s lives: Julie Beckett, the mother of Katie Beckett, for whom a crucial Medicaid waiver is named. Julie and Katie Beckett became advocates for people with disabilities because they wanted justice and a good life for Katie and all disabled people. 

Julie wrote, “As many parents will attest, there sometimes comes a moment in parenting where you discover strength you didn’t know you had — all because your child needs you.” We at Little Lobbyists have felt that same call. 

Little Lobbyists Executive Director and Co-Founder Elena Hung knew Julie Beckett and was, understandably, awed:

“Julie always spoke about Katie as her partner in advocacy. The last time I saw her, I was struck by how many of her stories and memories were about ‘we’ and ‘us’ and ‘Katie and I.’ It was never just about Julie or Katie, but about the two of them together. It's something that really spoke to me as I feel the same way about Xiomara and why I am so adamant about describing Little Lobbyists as a ‘family-led’ organization and not ‘parent-led.’ In my opinion, I think this is a defining narrative of Julie's advocacy: fighting for justice with her daughter and not for her.”

Julie and Katie were founders of Family Voices, whose mission is to promote “partnership with families–including those of cultural, linguistic and geographic diversity—in order to improve healthcare services and policies for children.” Of Julie’s passion, Family Voices said, “May it inspire each of us to recognize the power of our voices to improve the world around us.”

Julie’s daughter Katie was born in Iowa in 1978. At the age of four months, Katie contracted viral encephalitis, which caused complex respiratory problems and partial paralysis. Katie needed a ventilator to breathe, and, according to Medicaid rules at that time, people who needed a ventilator could only be cared for in a hospital. Katie could not be cared for at home, where she belonged. Within our lifetime, disabled children were still automatically institutionalized.

For three long years, Julie fought the state and federal governments, seeking a way to bring Katie home, where she would be surrounded by love and where she would ultimately thrive.

Family Voices photo: Julie and Katie (as an infant) [image description: A black and white photo of a woman with long dark hair holding an infant who has a tracheostomy tube. Another woman, whose face is not visible, holds a toy out to the infant.]

Julie and Katie joined the same cause disabled activists had been working on for decades: the right to live in their communities with dignity and respect, and to live full and happy lives. When Medicaid was established in 1965 as part of the Social Security Act, the program guaranteed that people who needed 24/7 care, i.e., nursing-level care, could receive it in an institution or hospital with no waiting list. But no one had the right to receive care at home. 

Julie Beckett reached out to everyone she knew. She told Katie’s story over and over again. Because of Julie’s refusal to give up, in 1981 Katie’s story caught the attention of new president Ronald Reagan. The president saw the Beckett family’s plight as an issue of burdensome federal regulations. He also recognized what the disability community had been saying for many years: home care costs far less than institutional care. 

In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. Katie Beckett came home. Katie Beckett lived in her community until she passed away at the age of 34. 

Today, all 50 states have a “Katie Beckett waiver,” which allows eligible children to live with their families, in their communities with the health care and adaptive supports they need. This waiver saves state and federal governments hundreds of millions of dollars annually, but there are still 800,000 people on state waiting lists to receive home care. When you live at home, surrounded by your loved ones, your health outcomes are better–there are fewer costly hospital stays. Julie Beckett wrote, “This waiver meant so much for us and for Katie that I proudly display “waiver mom” in my email address to this day.”

But, as Julie and Katie knew, the rights of disabled people are constantly under attack. While Reagan recognized the value of home care, today’s Republicans have tried, time and again, to gut Medicaid and turn back time to the ugly days of institutionalization. 

Our work is not yet finished: To this day, neither states nor the federal government have made Home and Community-Based Services (HCBS) a right instead of a “waiver” or “demonstration” program. For how much longer do we need to “demonstrate” that our disabled loved ones, both children and adults, survive and thrive at home, where they belong? 

It’s been nearly 40 years since Congress created these essential waiver programs. President Biden’s Better Care Better Jobs Act would provide enough funding to reduce or eliminate agonizing waiting lists, raise home workers’ wages, and create more jobs. 

Julie and Katie Beckett knew they had helped to create change, but they also knew their work wasn’t finished. We all must fight on. “You are not required to complete the work of perfecting the world, but neither are you free to abandon it.” 

The Hatcher Family [image description: A mom and dad along with their two children, son and daughter, pose outside the U.S. Capitol building on a strip of green grass. The family is white. They are wearing outfits that feature the colors navy blue and white. The father and son wear glasses. The mother and daughter have long blond hair. They are accompanied by a large dog with white curly fur.]

In 2017, people with disabilities, including kids, showed up to defend the Affordable Care Act, the law that protects everyone’s access to healthcare. Defending that law, which gave our kids with complex medical needs and disabilities the right to access the health care they need to survive and thrive in their homes and communities, was the catalyst that brought the families of Little Lobbyists together. Five years later it finally feels safe to say that we succeeded.

Fun fact: the Little Lobbyists logo was designed late at night while we were waiting for the Senate vote that saved the ACA in the first year of the Trump Administration. 

I’m Simon’s mom, the designer of the Little Lobbyists logo and our Communications Director. Along with my husband, Brian (a.k.a. Simon’s dad), I run a small design firm outside of Baltimore, where we’re raising our two amazing kids. Our daughter Olivia is a freshman at Johns Hopkins, double-majoring in pre-med and public health (the family’s other business). Simon is almost 16, and he loves to play Mario Kart, practice the drums, and has the best laugh you’ve ever heard. Simon also has hydrocephalus, cerebral palsy, epilepsy, autism, vision and hearing loss, a unique genetic disorder, and physical and cognitive disabilities. 

You could say he has a few “pre-existing conditions.” 

In fact, everyone in my family has pre-existing conditions - from my husband’s high blood pressure to my asthma.  Olivia doesn’t even have a spleen! But that's a story for another time. 

My family needs health care, and we need the protections of the Affordable Care Act (ACA) to ensure we can access that health care. Simon recently became eligible for a Medicaid waiver thanks to the ACA’s Medicaid expansion. Having Home and Community-Based Services through Medicaid has been life-changing for him. 

Because Brian and I are small business owners, the only way the two of us and Olivia can access health insurance is through the ACA’s exchanges. Every year, during the open enrollment period, we choose the plan that works best for our family. Thanks to the ACA’s guaranteed coverage of essential benefits, the plans are all good quality. 

But I can’t say they’ve always been affordable. 

As middle-class business owners, my family has never qualified for any subsidies. Every month I put our insurance payment of over $700 on our credit card. Most months, I can pay it off. But sometimes – especially during the height of the pandemic when business came to a standstill – I couldn’t. Those months, we’d accrue debt with interest, and I’d accrue a bit more anxiety.

When Congress passed the American Rescue Plan (ARP) in April of 2021, I was absolutely thrilled that it did so much to improve our country’s access to health care. 

Laura Hatcher [image description: A black & white photo of a white woman with sunglasses posing in a park with the U.S. Capitol building behind her. She wears a long-sleeved dark-colored t-shirt with the words “Health Care Voter.”]

The ARP increased vital funding for Medicaid Home and Community-Based Services, created targeted subsidies to help people in Medicaid non-expansion states access health coverage for the first time, and opened a special enrollment period to help more families get health care during the pandemic. It also expanded subsidies for families, like mine, who had never before qualified for any support. 

My health insurance now costs $600 less a month. That’s $7,200 I didn’t have to put on my credit card this year. That is affordable insurance. That is access to the health care my family needs. That is peace of mind.

In fact, the ACA improvements under the ARP have worked so well that a record number of people signed up for health coverage in 2021. Millions more families can now see a doctor when they are sick. They can get preventative screenings to stay healthy. Access to health care means lives improved, lives saved.

Unfortunately, right now, this increased access to health care and peace of mind is only temporary. The enhanced ACA subsidies, Medicaid funding, and extended enrollment are due to expire at the end of 2022. Millions of people may also lose their health care when the State of Emergency ends and states are once again allowed to purge Medicaid rolls. 

We simply cannot let that happen. 

Maintaining the health care protections and coverage provided by the Affordable Care Act against 5 years of constant, intense, political assault was a Herculean feat, but it isn’t enough. 

The expanded access and affordability temporarily created by the American Rescue Plan isn’t enough, either. 

After five years of fear and instability created by Republican-led threats to our basic right to access to health care, and after two years  of a deadly global pandemic that disproportionately impacted marginalized communities (including people of color and those with disabilities),  it’s abundantly clear that our nation’s ability to survive, and hopefully thrive, is not possible without EVERYONE having access to health care. 

It is also clear that protecting and improving our access to health care is possible when we prioritize it, as we did just one year ago. 

A better, healthier future is within our reach – but we must once again show up to make that happen. Tell your legislators they must not allow us to go backward. Vote for candidates who will move our country forward.

The ACA was a start. Now it is time to finish the work. Health care is a human right.

Brynleigh Shillinger, age 8. [image description: A young girl with light skin, dark hair and a purple hair bow poses in an outdoor chair with teal cushions. She holds a purple sign that reads “Brynleigh’s Act.”]

My daughter Brynleigh is a happy girl whose smile brightens up a room, She is in first grade and absolutely loves music therapy. She doesn’t like eating veggies, but will polish off a box of chicken nuggets before we finish our drive back home. Brynleigh was diagnosed at nine-and-a-half months with  Epilepsy and Tuberous Sclerosis Complex (TSC), which is a rare genetic disorder that causes tumors to grow in major organs. TSC is the leading genetic cause of both Epilepsy and Autism.

Brynleigh and I are also advocates for the Seizure Safe Schools Initiative in Maryland, promoted by the Epilepsy Foundation for implementation in all 50 states. Our family has advocated with the TS Alliance and the Epilepsy Foundation since our daughter’s diagnosis. We’ve always had concerns about her transition to school. At school, who would be trained to respond to her seizures?

Approximately 1 in 10 people will have a seizure in their lifetime–a teacher, student, or even a school nurse could someday benefit from others nearby who know how to respond. This is what the Epilepsy Foundation’s Seizure Safe Schools Initiative is all about. In 2018, Kentucky became the first state to pass a Seizure Safe Schools bill. Since then, similar legislation has been passed in 12 states: AL, CO, IL, IN, KY, MN, NE, NJ, OK, TX, VA and WA. Another 10 to 15 states have bills in some stage of the legislative process. 

Lauren and Sean Shillinger with Diana Briemann, an advocate and teacher who also has epilepsy. (Pre-COVID photo) [image description: A tall man with light skin and grey hair stands behind two women with light skin, one with blond hair and one with red hair. Each is dressed professionally and wears a purple item of clothing to symbolize epilepsy awareness.]

Maryland needs to join the ranks of states with Seizure Safe Schools. There are 59,900 people living with epilepsy in Maryland, of which 7,900 are children and teens. In 2019, my family approached our state legislators, Senator Ronald Young and Delegate Ken Kerr, on behalf of the Epilepsy Foundation, asking them to be co-sponsors of Brynleigh’s Act. After hearing our family’s story and learning about the prevalence of epilepsy in our state, they agreed and Brynleigh’s Act was first introduced in the Maryland General Assembly.

We are hopeful that this year, 2022, will be the year that Maryland finally passes our bill! Brynleigh’s Act would train school personnel on seizure detection and first aid response on a biennial basis; mandate Seizure Action Plans to be on file for every student diagnosed with epilepsy or a seizure disorder and require those plans be available to all personnel; ensure the administration of medications approved by the U.S. Food & Drug Administration; and include a Good Samaritan clause.

Here’s how you can help support Seizure Safe Schools! In Maryland, contact your Maryland State Senators and Delegates to share your story and ask them to vote YES on Brynleigh’s Act (HB136 & SB299) to make our Maryland schools seizure safe now!

In other states, connect with your Epilepsy Foundation chapter to support their effort. Most states have already started this process and are actively looking for families to share their story.   

Sharing your story can turn adversity into advocacy, and help make a big impact in your community—it could even save a life!

A group of Epilepsy Foundation of Maryland members pose with local physicians and bill co-sponsor Delegate Ken Kerr in the Annapolis General Assembly. (Pre-COVID photo) [image description: A group of 14 adults, both men and women of a variety of skin tones, pose in an atrium in front of a hearing room. Many wear a purple item of clothing. Double doors are open behind them and a sign at the top of the doors reads “Education, Health and Environmental Affairs Committee.]

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After graduating from Elon University with a degree in Corporate Communications, Lauren Shores Shillinger had a 12-year career in the electronic healthcare industry. Lauren and her family  have volunteered, advocated, and fundraised for TSC and Epilepsy. In 2017, Lauren became Chair for the TS Alliance Community Chapter in Maryland and began serving on the TS Alliance committees for Government Relations and Community Outreach. She annually participates in the March on Capitol Hill, and has planned and implemented the first TSC Maryland Day of Advocacy and Awareness in Annapolis. Lauren is currently advocating for Brynleigh's Act, which would make Maryland schools seizure safe. She has also served as the Walk Chair for the National Step Forward to Cure TSC walk and various other fundraising events. Lauren is completely dedicated to making a difference in not only her daughter Brynleigh’s life, but all who are affected by TSC and Epilepsy!

Dear Josephine,

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

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

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

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

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

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

She never, ever gave up. 

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

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

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

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

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

All our love, always, 

Your Little Lobbyists family 

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

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

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

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

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

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

Becca today. [image description: A young woman with light skin and shoulder-length red-brown hair poses on a porch. She wears a blue denim jacket over a bright red shirt. She wears thick-frame black eyeglasses.]

My daughter Becca is thirty-two years old. She volunteers at a stable where she’s been riding horses since she was eight years old. She’s training her golden retriever puppy, Lexie, as her service dog, and she’s helping her brother learn tools to assist with his low vision, a condition she shares. 

Becca has complex medical needs and disabilities, but thanks to the support of Medicaid Home and Community-Based Services (HCBS), Becca is able to direct her own care and decide where she wants to live. She’s hired her own employees through supported decision making. Becca would never have survived a nursing home outbreak of Covid-19. She has become a strong advocate for herself and for others who should have the chance to live in their communities. 

We have come a long way in developing care systems for our most medically complex and disabled children and adults. But it wasn’t always that way. Even now, many have not had the opportunities that help Becca. Too many are still on years-long waiting lists for HCBS.

When Becca was born in 1989 she spent the first six months of her life in the neonatal intensive care unit (NICU). We later learned that she has Noonan Syndrome, a genetic disorder affecting the heart, skeleton, and other other systems. Becca has heart, airway, lung, gastrointestinal, lymph, and immune system issues. At two-and-a-half months old, she experienced her first code blue.  

We quickly learned that the hospital was the worst place for an immune-compromised child. Fortunately, Becca’s medical team helped us apply for one of just 200 Community Alternative Care (CAC) waiver slots in Minnesota, and she was one of the first babies out of the children’s hospital to have an Individual Family Service Plan (IFSP). She was supported at home with caregivers, therapies, and nursing.  

Later, after our private insurance denied Becca care due to preexisting conditions (this was before the protections of the Affordable Care Act), and our family had fallen into poverty to cover her catastrophic medical bills, Becca became eligible for Social Security (SSI) and was finally able to obtain a Medicaid waiver to provide for her long-term care needs.

Thanks to Medicaid waivers for Home and Community-Based Services, we found our new normal and I was able to meet Becca’s needs and also care for my other five children. Medicaid even helped Becca go to the same school as her siblings! She was the first medically complex, technology-dependent child to be included at the local elementary school. 

The Yurcek Family several years ago. [image description: A father poses in the center of the frame, surrounded by six children of various ages and his wife. The family is light-skinned, with brown hair of various shades and styles. There are five people who present as female, and three who present as male. The father, who is a physician, wears a white lab coat and has a stethoscope slung around his neck. Everyone is smiling broadly.]

The Medicaid waivers that allowed Becca to live at home with our family helped her not merely survive, but thrive! The same waivers allowed our family to survive as well. We dug ourselves out of poverty when my husband returned to school. He was able to become a General Surgeon because we had home nursing support for Becca.  

My husband and I were also able to pay the support Becca received forward by adopting six foster care siblings with complex trauma and fetal alcohol spectrum disabilities and our medically fragile foster care child Mac.  As my husband and I age, we are counting on Medicaid HCBS waivers to help our children continue living in their community as adults. 

We have experienced the best of Medicaid waivers, but so many of the families I have helped and advocated for are not as fortunate as we have been. These families need home health care workers, and their disabled loved ones have a right to get the care they need in their homes and communities. Family caregivers need to be valued and supported. For family caregivers, fighting red tape for services is exhausting. Because of a lack of funding and low pay, it is difficult to find and hire direct care workers. 

Right now, the Build Back Better Act that is waiting for a vote in Congress includes an historic investment in care that would expand Medicaid’s Home and Community-Based Services. If passed, this funding would get hundreds of thousands of people with disabilities like Becca off of waiting lists for care; it would create thousands of good paying care jobs; and it would allow over a million unpaid family caregivers to return to work or school knowing that their loved ones are getting the care they need at home. Please contact your representatives. Ask them to pass the Build Back Better Act, because for families like mine care can’t wait any longer.

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Ann Yurcek is a mom and an advocate who has written to and met with legislators to push for much-needed lifelines for disabled children and adults with families like hers. In 2000, she attended the Washington, DC launch of the Medical Home Conference. As the Affordable Care Act was being planned, Ann was asked to write a piece for Health Affairs, “Against All Odds, How A Medicaid Waiver Brought Our Critically Ill Daughter Home,” and “Tiny Titan, Journey of Hope,” her family's story.

Daniel (center) with his sister Melody (left) and his mother Carolyn (right) at Melody’s wedding. [image description: A wedding photo depicting a bride with light skin and long, curly blonde hair wearing a white lace gown and veil stands at the left of a young man seated in his wheelchair. The young man has light skin, short dark hair, and has glasses. He wears a navy blue bow tie and white dress shirt. To the right stands his mother, a woman with light skin and dark brown hair in an up-do, who wears a navy blue, off-the-shoulder gown. She also wears glasses and a wrist corsage of white roses. The party is posed under a trellis arch of white roses and green leaves, with the ocean in the background.]

In the spring of 2010, I headed to the zoo for my son Daniel’s annual school field trip. I loved spending the day with other parents of children with disabilities. The comradery fed my soul. This was the last trip of his elementary school years in our home state of Florida.

Daniel is now a 22-year-old man. He’s a happy guy who loves to drum, swim, and listen to music. He was born in 1998 with a rare genetic disability that affects him physically and intellectually. It wasn’t officially diagnosed until he was 21 years old, thanks to the increased availability of genetic testing. A random deletion on one of Daniel’s calcium channel genes results in a severe seizure disorder and global developmental delay. 

After cruising past the giraffes and elephants, we took a break for lunch. Wheelchairs rolled in, some with IV poles attached for midday g-tube feedings. Pureed lunches were pulled from backpacks for those able to eat by mouth. I could relax knowing there were others who understand my struggles as well as my deep love for my son. Among them was the unfamiliar face of a mother and child new to our school. 

The new mom had recently moved to Florida from Wisconsin. My first suggestion, as it often is, was to contact the Agency for Persons with Disabilities to enroll in the Home and Community-Based Services (HCBS) Medicaid waiver program. Daniel had been on the waitlist for eight years, one of 20,000 Floridians waiting for services that provide respite, personal care assistance, and help with the extra costs of raising a child with disabilities or caring for an elderly relative. Today, there are 72,000 Floridians on HCBS waiting lists. 

“Oh, we’re already on the waiver,” the transplanted Floridian explained. 

“What? Daniel was born here, and we’ve been on the waitlist for years. I have written so many letters to my representatives, helped with state-wide petitions, and made more calls than I can count. HOW did you get on the waiver already?” 

She looked a little embarrassed. I have her to thank for opening my eyes, though.

“Well, my ex-husband has back problems. Not severe, but bad enough that we were able to get crisis services when we documented his chronic pain,” she told me.

I suffer from back pain due to repetitive lifting of Daniel. My back problems were compounded by a car accident. It turns out that a caregiver’s chronic pain moves a child’s status higher on the waiting list in Florida. So, I filed the appropriate paperwork. Several months later, we had some help.

Why do people with disabilities  and their parents have to jump through so many hoops to access the funds that keep them at home and in the community where they thrive? The answer is chronic underfunding, which is why the Better Care Better Jobs Act (BCBJA) is so important. The BCBJA would eliminate state waitlists, increase pay for home care workers, and create good jobs with appropriate training in home health care. In Florida alone, 5,000 new jobs would be created. In addition, 10,100 family caregivers in Florida would be able to return to work themselves. 

Once enrolled in Florida’s HCBS system, we could hire personal care attendants to dress and feed Daniel in the morning and get him on his school bus, so that I could be at my job on time. The downside was significant turnover at the agency I used, and his care was not consistent or high quality. I cringe when I remember travelling out of state to be with my mother as she was dying, and Daniel’s assistant left him unattended, resulting in a fall and the loss of a permanent front tooth. 

Low pay for home care workers meant I couldn’t always rest easily when Daniel was in their care. In Florida, there’s a consumer-directed option (also known as “self-directed” services) that allows me to hire friends, family, or my own hand-picked assistants. After Daniel’s fall and injury, I moved us into that option. 

Florida has a base pay rate of $12 an hour for home health care workers, which is not a living wage. I am able to increase it as our budget allows, but a few dollars more is not enough incentive for the type of caregiver Daniel needs. Plus, increasing hourly pay reduces the number of total hours available to us. As a result, home health care work is not sustainable for those who need employee benefits such as health care and paid time off, a huge barrier to assembling a quality team. I have been lucky to find a few fine people who take good care of my son, but they are the exception, not the rule.  

The HCBS programs, nationwide, are in need of crucial improvement. I am pained that so many in my community are still waiting to be added to this critical waiver, or, like me, are having difficulty finding care providers they can trust. There is an urgent need for the Better Care Better Jobs Act to be passed to create jobs, raise wages for direct care workers, and eliminate HCBS waiting lists. 

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Carolyn Murray is a retired registered nurse currently caring full-time for her son Daniel, who has complex medical needs and disabilities. She is also a writer for professional nursing journals and other publications. Carolyn works closely with her former husband, Tom Murray, to provide a meaningful life for Daniel. Her daughter Melody and son-in-law Andrew live nearby in Jacksonville, Florida.