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. 

Jenny takes a selfie in one of the California Assembly buildings in Sacramento. She wears her trademark bright pink glasses, as well as a bright pink blazer. Behind her are the ornate columns, gates and tile floors of a legislative building.

Hi! I’m Jenny McLelland and I’m the Director of Policy for Home and Community-Based Services for Little Lobbyists. My family lives in Clovis, a small city in the agricultural Central Valley of California. My husband is a physical education teacher, and I’m a retired police officer. We have two teenage children - Josephine and James.

In my role as Director of Policy for Home and Community Based Services, I get to help turn family stories into solutions. That means I’ve had to learn a lot about Medicaid Home and Community-Based Services waivers. Medicaid HCBS Waivers are the legal framework that pays for children like my son to get nursing care at home. I want to make sure that any child who needs nursing care at home can get it, like my son James.

I got involved with Little Lobbyists because of my 13-year-old son James. He’s a really fun kid. He gets good grades, he plays percussion in the school band, and he loves 3D design and printing. James has a rare genetic disorder that affects his airway and breathing, so he has a tracheostomy (a plastic tube in his neck) to help him breathe and he uses a ventilator at night. 

My biggest priority as an advocate is to make sure medically complex kids have access to nursing care at home. My son spent most of the first year of his life in an institution because we couldn’t get the support we needed to bring him home - I don’t want that to happen to anyone else.

James (l) and Jenny (r) pose in a hospital room at discharge. Jenny is wearing bright pink eyeglasses and has chin-length blonde hair. James is wearing a sage green Pokemon shirt and holds a paper shopping bag and a robot. Behind them are an unmade hospital bed, and a variety of medical equipment and monitors.

There are two equally important sides of advocacy: telling stories that help people understand what life is like for disabled kids, and using those stories to solve problems.  Little Lobbyists does a great job of helping families tell their stories in a way that puts a human face on a complicated policy.

When I first got involved in advocacy in 2016, it was as a storyteller, working to save the Affordable Care Act. James benefited from a provision of the ACA that banned health insurance companies from imposing “lifetime limits” on medical care. Because James spent most of the first year of his life in the hospital and in a nursing home, he exceeded the cost that would have been his lifetime limit when he was only a few weeks old.

As I got more involved, I realized that what I really love is the details. I like reading the details of Medicaid Home and Community Based Services waivers–these are the state programs that give kids access to Medicaid services at home. While the federal government establishes a general set of rules, every state designs its own programs, so figuring out what the rules are for your state can be confusing. I like helping people figure out what’s going on with their own state waivers and figuring out who to contact to fix things.

You can reach out to me at jenny@littlelobbyists.org to talk about:

• How can Medicaid help disabled kids live at home with their families.

• What other programs help disabled children access their full civil rights in the community.

• How Medicaid can help disabled young adults who are aging out of the pediatric care system.

I’m excited to work with the team at Little Lobbyists so that our kids can write their own stories!

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

Elena Hung wears a Little Lobbyists button, holding a microphone, and speaking at a podium that says “Care Can’t Wait.” Photo credit: Brooke Anderson @MovementPhotographer

On August 26, 2024, the Care Can’t Wait bus tour kicked off its first event in Chicago, Illinois.  "Care on Tour" would wend its way through nine cities in seven states. It was part of an ongoing national campaign by the Care Coalition that highlights the importance of affordable, accessible care – including aging and disability care, child care, and paid leave – through powerful storytelling, community engagement, and policy advocacy. 

On the Care Tour, we passed the mic and heard from local families who are struggling with reliable and affordable care for their loved ones.

We heard from family members forced to choose between caring for themselves or their parent, or their child: a choice no one should ever have to make.

We heard community leaders speak on paid family and medical leave.

And, close to my heart, we had disability representation throughout the Care Tour.  In Michigan, we heard from Dessa Cosma, the Executive Director of Detroit Disability Power, and, in Georgia, from Dom Kelly, the co-founder and President of New Disabled South. 

We also heard from elected officials from the U.S. House of Representatives, including care champions Debbie Dingell and Nikema Williams, who pledged to continue their support of robust care policies because they understand what is at stake.

As serious and heavy as this topic can be, there was also so much joy.  That’s right: joy!  The bus tour organizers made time and space for joy at each stop: we had marching bands, a popsicle truck, face painting, live music, a stilt walker, a disabled acrobat performer, and much more!

There to represent Little Lobbyists families, I was honored to bear witness to the personal care stories everyone shared at the mic and the intimate conversations that followed.  As I spoke alongside caregivers, care workers, those receiving care, and elected officials, I couldn’t help but note the common thread that connected us all. My care story might not be the same as yours, and your care story might not be mine, but it is undeniable that we all have a care story.  This tour felt like we were one community: we each had a care story that united us in deeply personal and urgent ways.  Care wasn't something that happens to other people; we are all involved with care. 

Group photo at Love Park in Philadelphia, PA: A couple dozen advocates pose by the LOVE sculpture (bright red “L” & “O” stacked above “V” and “E”) with the skyline of Philadelphia behind them. They wear colorful t-shirts and hold up signs, including “Care Can’t Wait” (yellow, white and purple lettering on a dark purple background). Photo credit: Brooke Anderson @MovementPhotographer

This is my care story:

My daughter Xiomara, the joy of my life, is the reason I was on the tour and why I co-founded Little Lobbyists.  She turned ten this summer and just started the fourth grade.  These were two milestones that were never, ever promised to a medically complex and disabled child like her. 

Xiomara attends school with her nurse.  She uses a tracheostomy to breathe and a feeding tube for all of her nutrition.  She has a nurse by her side at all times to care for her medical needs and keep her safe.  Without a private duty nurse, Xiomara would not be able to attend school and learn.  Without a one-to-one nurse, kids like her would not be able to live at home with their families.

I think of all the disabled children who cannot attend school because they don’t have the care they need.  I think of all the disabled children who cannot live at home, and the families that are torn apart because they don’t have the care they need.

I have often said: there is not a single thing I would change about my daughter, but there are a million things I would change about this world so that it would be worthy of her.

And the first thing I would change is to fully fund home and community-based services.  Doing so means that disabled children and disabled adults can live in the community they choose, surrounded by their loved ones, and receive the care they need. 

It wasn't that long ago that a child like mine would have been automatically institutionalized–kept away from her family and her community– just for being disabled. Some still are. Disabled people risk being institutionalized when they can’t get the care they need at home.  That's not right.

Because there is nothing wrong with being disabled!

What is wrong? Disabled children not getting the care they need.

That is my care story, and the care story of countless Little Lobbyists families. Our stories need to be told and heard.  We know what is at stake if our disabled children do not receive the care they need.

“Care on Tour” was a periodic reminder that while a few are trying to destroy what we hold sacred, there are many more of us trying to create a world of justice and equity and joy.  We need to work hard, but we cannot deny ourselves joy in the process.  If we do, we are missing the whole point.  If we are fighting for our kids to survive, but not thrive, we are missing the whole point.  We can do both!  We can survive AND thrive!  We can work hard AND play hard.

We will hold onto that joy while we all do everything possible to elect leaders who will champion care and fight for our disabled children to live at home, attend school, and be part of their communities. 

Group photo in front of the Care Can’t Wait bus in Raleigh, NC.

Photo of Little Lobbyist Adonise with his mom Anne in New York, holding a sign that says “El Cuidado No Puede Esperar” (“Care Can’t Wait” in Spanish).

Photo of Nicole Jorwic, Dom Kelly, and Elena Hung

Photo of Nicole Jorwic (Chief of Advocacy and Campaigns, Caring Across Generations), Dom Kelly (Co-Founder and President, New Disabled South), and Elena Hung (Co-Founder and Executive Director of Little Lobbyists). 

Photo of marching band performing in front of the Care Can’t Wait bus.

Photo of Little Lobbyist Cole in Pennsylvania holding up a sign that says “Care Can’t Wait.”

Thank you to the Care Can’t Wait Coalition and to the partner organizations who supported this bus tour:  Caring Across Generations, National Domestic Workers Alliance, MomsRising, Paid Leave for All, SEIU, and GoFundMe.

Special thank you to Ai-jen Poo and Nicole Jorwic for your leadership, partnership, and friendship.

#CareCantWait

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Elena Hung is the Co-founder and Executive Director of Little Lobbyists. She lives in the Washington, DC area with her two human children and two feline children. Elena enjoys hiking in the mountains, wearing dresses with pockets, and eating potatoes.

Alison, Ethan and Mychal (l to r) pose for a selfie. Ethan and Mychal are giving thumbs-up. All are smiling.

A few weeks ago, I sat in a room in the White House, surrounded by disabled advocates, and listened to a man named Mychal Threets speak about library joy. He was a panelist at the event, the White House Disability Pride Convening

I’d seen Mychal on TikTok before as “Mychal the Librarian,” drawn in by his wide smile and earnest delivery while he shared stories of library kids and library grownups and the ways he was working to make libraries a safe place for everyone. I nodded along, thinking how wonderful it was that there were advocates out there making the world a better place for disabled people, thinking about how grateful I was for organizations like Little Lobbyists who were doing the same work in the world of government.

When I walked into the room that day, my first ever visit to the White House, I thought I was there to advocate for my son, who, with multiple severe heart defects, a rare congenital disease, and a neurodivergent brain, certainly ‘belonged’ in a gathering of disabled people. I didn’t. I was just a little quirky. I liked things a certain way and had systems for how I organized my life, but disabled? That was for other people.

But what if I was one of the people Mychal was talking about?

Growing up, I never felt like I belonged anywhere, least of all in my own skin. Little things that didn’t bother my brothers and sister were the end of the world to me. I seethed with anger, frustrated beyond rational expression when I couldn’t get my banana cut into exactly twenty pieces or when my mother asked me to wear an itchy skirt to school. Both my frequent meltdowns and my myriad systems were equally well known to my family, who endured both with a sort of baffled confusion. I understood what was going on about as little as they did, and so we all just muddled along together through my childhood.

My only saving grace was found between the pages of the books I’d started reading soon after I turned three. I read endlessly, some of my favorites over and over and over again until I had them nearly memorized. (I’m 41 now and still have the Jabberwocky running through my head on a near constant loop some days.) One of my happiest memories was when my mother explained that I was getting a custom-built bookshelf in my room, filled floor to ceiling with my treasured books. I arranged them all, from the Jane Austen box set my grandmother had gifted me in fourth grade to foreign language dictionaries to the journals filled with my own writings.

Alison circa 1992: her outfit is pink and blue and she’s posed against flowers and shrubs in front of a suburban home. She wears a backpack and looks very determined. Photo credit: Fiona Wilks.

By the time I reached middle school, the library was my safe haven. There wasn’t much of a place in the social hierarchy for the nerdy, awkward kid with a preposterous vocabulary, and so I’d hide among the stacks during lunch, pulling books off the shelves and escaping for a few precious moments to worlds I could pretend were made for me.

It took many years and my own son’s diagnosis of autism before I finally put the pieces together. Even now, after a kind woman put her hand on my shoulder and assured me that self-diagnosis is valid and that my son and I are an “excellent parent-child fit” (after I had pulled her into a deep dive about one of my son’s special interests), I still don't have an official piece of paperwork to tell me what I maybe should have known several decades ago.

I am autistic.

Words and language are my special interests. There was a reason that I felt more at home in libraries and in the imagined worlds of the books I devoured there than anywhere else. When I read, I’m not trapped in a world that’s too loud, a world where the seams of my socks never sit correctly and a soggy piece of cheese is a nightmare that I might need several business days to recover from.

Maybe you’re sitting there reading these words and nodding while I describe things that sound familiar to you, and you’re wondering how I went nearly forty years without having any idea that I was trying to navigate the world with an unrecognized disability. And I’d tell you that up until I sat in that room, I don’t think I had even come to terms with the fact that I have a disability at all.

Alison with her two children and her husband at a Heterotaxy Connection conference. The family wears conference name tags on blue lanyards around their necks and are posed in front of a conference backdrop with hand and heart icons, and the phrase, “Heterotaxy Connection,” “SEE: Support, Educate, Empower,” all in blue and yellow against a white background. Photo credit: Necia Sabin.

And then Mychal said something that rocked me. “As a librarian … what I seek to do every single day is to assure people that they do belong in the library. But not just the library, the world. It is okay to celebrate your disability.”

It was a blinding moment of clarity, one I’d been waiting for my entire life, and I found myself blinking back tears.

I belonged in that room. Sitting there watching ASL interpreters speak for the Deaf, listening to incredible speakers communicating using Augmentative and Alternative Communication (AAC) devices, the sounds of happy stimming all around me, I realized for the first time that I belonged in a gathering of disabled people because I am disabled. And letting myself believe that for the first time in my life felt like coming home.

To quote Mychal, “Library joy is disability joy is all just human joy.” And as a disabled human who finds her joy between the pages of books, I approve this message.

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Alison Chandra is a pediatric home health nurse and the mother to a medically complex child. She advocates for access to healthcare and disability justice from both sides of the bed. 

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.

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

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

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

Reducing the Cost of Health Care

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

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

Commitment to Home Care

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

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

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

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

Family Issues

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

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

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

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 Lobbyist James McLelland (c) and his mom 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.

The U.S. Supreme Court’s Olmstead Decision, a landmark civil rights case for people with disabilities, marks its 25th anniversary this year! In 1999, the Court upheld the right to community integration in the Americans with Disabilities Act (ADA) of 1990. Our disabled loved ones have the right to live and thrive in their homes and communities, where they belong. Home care is a human right. 

To honor the 25th Anniversary of the Olmstead Decision, the Biden Administration held multiple events. On Tuesday, the White House hosted a screening of the short film, Take Me Home, by director Liz Sargent starring her sister Anna, an actress with cognitive disabilities, followed by a discussion with advocates and top members of the Administration about the importance and challenges of community living,and how people with disabilities are part of making positive change. Later in the week, the Departments of Justice and Health and Human Services held a joint celebration that included remarks and panel discussions with leading officials and disabled advocates–including Little Lobbyists James and his mom Jenny McLelland–on the significance of Olmstead and on the Biden Administration’s work to make sure every person with disabilities has the right to live in their own community. 

Disabled activist Emmanuel Jenkins, Vice Chair and Community Relations Officer for the Delaware Developmental Disabilities Council, had this to say: “Without the Olmstead Decision, I would not be sitting in the White House … without that decision I would not be able to work a full-time job … I would not have just celebrated 15 years of marriage … without that decision, I would not be able to elevate that voice [those of people with disabilities].”

Little Lobbyists James, age 13, from California said: “I’m proud to be disabled. It’s part of who I am. … Olmstead means I have a nurse who goes to school with me to make sure I  keep breathing while I’m in class … who comes to my house at night to manage the ventilator 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.”

What was the Olmstead Case About?

Olmstead vs. L.C. & E.W. was brought by two disabled women, Lois Curtis and Elaine Wilson, against the State of Georgia and its commissioner of the Department of Human Resources, Tommy Olmstead. Lois and Elaine had been repeatedly institutionalized, and their suit argued that this was unjustified segregation and discrimination under Title II of the ADA. Lois was the driving force behind the case, repeatedly contacting the Atlanta Legal Aid Society to ask for their help, and in 1995, it agreed. 

Photo Credit: Official White House photo by Pete Souza. [image description: Lois Curtis (center) presents President Barak Obama (r) with one of her paintings. To the left of Lois is her direct support professional. They are in the Oval Office.]

In 1999, the Supreme Court sided with Lois, agreeing that “people with disabilities […] have the right to receive the treatment they need in an integrated setting if that is what they want, if their doctors agree, and if it doesn’t fundamentally change how the state provides services to people with disabilities.” According to all accounts of her life, Lois Curtis thrived outside of the institutions that had once oppressed her. She became a well-known artist with a talent for portraiture. 

What is the “right to community integration”?

Disabled people have been fighting for their community living rights throughout U.S. history, for the right to stay out of institutions, facilities, and asylums. Medicaid itself did not allow in-home care until 1983 when Katie Beckett’s situation caused Congress to finally establish the first HCBS waiver. The ADA of 1990 established community living rights under Title II: “The ADA bans the unnecessary segregation of people with disabilities in a regulation called ‘the integration mandate.’ As a result, State and local governments that provide services to people with disabilities must offer those services in people’s homes and communities—not just in institutions.”

What does this mean for my family?

Under federal law, Medicaid’s HCBS waivers are still considered “optional” services for states, and states continue to make it difficult for disabled people to live in their communities, but progress is on our side. Given the high costs of institutionalization, states are expanding their offerings and beginning to reduce long waiting lists. The American Rescue Plan of 2021 provided additional funding for HCBS, and, as of last year, states have committed approximately $37 billion to such programs. All 50 states now have Katie Beckett waivers for minor children to live at home. 

Little Lobbyist Rob Stone, seated in his wheelchair and wearing his trademark Clark Kent glasses, smiles at the Olmstead White House event. He poses in a doorway with the blue oval seal of the White House and an American flag behind him on a yellow wall.

Many families, though, first qualify for HCBS as their disabled loved ones transition from high school to adult services. While this transition can be emotional and difficult, remember that you or your disabled loved one have the right to live in your community in the most integrated setting appropriate to your needs. If transition coordinators propose something that isn’t right for you or your dependent adult, ask hard questions. Often, school systems will present transition as if entitlements end with high school graduation; however, civil rights are also an entitlement. Remind them of that. Ask about HCBS “self-directed services,” a good option for many people. 

There are 56 State Councils on Developmental Disabilities. Reach out to yours with questions and concerns. The National Association of Councils on Developmental Disabilities (NACDD) has many resources, including tips for advocacy. 

And never give up. As former congressman Tony Coelho–the principal author of the ADA, and a person with a disability–said at the White House, “My philosophy in life is this: give me the right to fail. But in order to do that, give me the opportunity to succeed. And that’s what we all want–nothing more, nothing less. But we want that opportunity to succeed. And we only get that opportunity if all of you in this room work to make it happen. We did not get Olmstead, we did not get the ADA on our own. We got the ADA because of all of you and the rest of us all over the country who have disabilities.” 

What’s Being Done to Ensure My Rights?

Olmstead marks the beginning of enforcement of community living rights for disabled people and the expansion of Medicaid’s Home and Community-Based Services (HCBS) waivers. Since 1999, states have made progress on HCBS: These supports include aides and other staff, job assistance and coaching, medical care, housing options, and funds for equipment and activities. But we have a long way to go.

Disabled advocates and members of the administration agree that there’s a lot more work that needs to be done to fulfill the promise of Olmstead and ensure all people with disabilities can access their civil right to get the care they need in their own homes and communities. 

On the first day of his administration, President Biden mandated that his Administration would be focused on equity. The President has made it clear that he wants to work with Congress to provide the funding needed to end Medicaid waiting lists for home and community-based services—a priority he made a “down payment” on with an investment of $37 billion from the American Rescue Plan. 

In addition to funding, the Administration has taken many actions to expand and improve the rights of people with disabilities. Some of these actions include:

• American Rescue Plan: $60 Billion invested in the care economy, including over $30 billion for home and community-based services (HCBS) 

• Multiple Executive Actions to improve equity and access to care, including an Executive Order on Diversity, Equity, Inclusion, and Accessibility in the Federal Workforce, and a set of sweeping Executive Actions to Improve Care

• Established new rules to ensure access to Medicaid HCBS

• Department of Transportation established the Airline Passengers with Disabilities Bill of Rights, created new rules for how airlines handle wheelchairs and to make airplane bathrooms accessible, and provided $1.75 billion for states to make public transit stations accessible

• The Department of Justice established a new strike force to enforce Olmstead and expedite case resolution that has helped 500+ adults and children in every state

• Established the Direct Care Workforce Strategies Center and actions to address the care workforce crisis 

• Invested $212 Million to Expand Affordable Housing Options for Persons with Disabilities

• Expansion of Certified Community Health Clinics to improve access to mental and behavioral health services 

• Updated Section 504 of the Rehabilitation Act, which protects people with disabilities from discrimination, for the first time in 50 years. 
  

You can find additional resources and learn more about the actions the Biden Administration has taken to enforce Olmstead and expand access to community living for all people with disabilities using the links below:

• From the Department of Justice Civil Rights Division:
  https://www.ada.gov/topics/community-integration/

• From the Department of Health and Human Services:
  https://www.hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html

• From the Administration for Community Living:
  https://acl.gov/news-and-events/events-and-observances/olmstead-anniversary

Preview video of TAKE ME HOME: Anna peeks around a doorway in her home. Video includes links to purchase the short film.

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Jeneva Stone is the Little Lobbyyists blog manager, and Laura Hatcher is the Little Lobbyists Communications Director.

Little Lobbyists Rob Stone poses in front of a blue and white backdrop with the logo of the U.S. Department of Health and Human Services, as well as a sign to the right of it that reads, “Disability Rights Are Civil Rights.” Rob is a wheelchair user, and he is dressed in an orange and black plaid shirt. He wears glasses and sports a mustache.

“By removing barriers to health care and social services, this rule advances justice for people with disabilities who have for too long been subject to discrimination. No diagnosis should be missed because of an inaccessible mammogram, no patient should be left with questions about test results due to inaccessible websites, and no life should be valued less due to disability. This is the promise of Section 504 of the Rehabilitation Act and through this action the Biden-Harris Administration is, once again, making clear its commitment to equality and civil rights.”

–HHS OCR Director Melanie Fontes Rainer (press conference)

On May 1, the Biden Administration took a giant step forward in disability rights, issuing its final rule on the long-awaited Health & Human Services updates to Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination on the basis of disability “under any program or activity receiving Federal financial assistance.” In the 50 years since it passed, Section 504 has never been revisited or revised–until now–despite its historic significance as the cornerstone of disability rights, long fought for by the disability community. Our Little Lobbyists families were there to join in the celebration!

U.S. Secretary of Health and Human Services Xavier Becerra held a press conference to celebrate this important historical milestone, long fought for by disability rights advocates. He reaffirmed the Department’s commitment to the rights of disabled people, telling the audience that these are a top priority of President Biden. Becerra introduced the new rulemaking, Nondiscrimination on the Basis of Disability in Health and Human Service Programs or Activities, saying that it “updates, modernizes, clarifies, and strengthens the implementing regulation for Section 504” in programs administered by HHS. 

These programs include Medicare and Medicaid, the foster care system, home and community-based services, and requirements for accessibility in hospitals, physician offices and clinics receiving federal funds–and much more! 

Alison Barkoff, who performs the duties of Administration for Community Living (ACL) Administrator and Assistant Secretary for Aging at HHS, describes what advances and improvements our community may expect from the new federal guidance: 

Secretary Becerra (l) poses with, left to right, Little Lobbyists Executive Director Elena Hung (who wears a red jacket), Jeneva Stone (white jacket), and Rob Stone (in front of Jeneva). Two other celebrants from the press conference are also in the photo.

• Discrimination in medical treatment: Medical treatment decisions may not be based on “biases or stereotypes about people with disabilities, judgments that an individual will be a burden on others, or beliefs that the life of an individual with a disability has less value than the life of a person without a disability.” 

• Community integration: “The rule clarifies obligations to provide services in the most integrated setting appropriate to the needs of individuals with disabilities, consistent with the Supreme Court’s decision in Olmstead v. L.C.”

• Accessibility of medical equipment: These address physical barriers to health care, such as “exam tables that are inaccessible because they are not height-adjustable, weight scales that cannot accommodate people in wheelchairs, and mammogram machines that require an individual to stand to use them.”

• Web, mobile app, and kiosk accessibility: “These provisions are particularly important given the increased use of websites, apps, telehealth, video platforms, and self-service kiosks to access health care.”

• Value assessment methods: “The rule prohibits the use of any measure, assessment, or tool that discounts the value of a life extension on the basis of disability to deny, limit, or otherwise condition access to an aid, benefit, or service.”

Both Secretary Becerra and Office of Civil Rights Director Melanie Fontes Rainer affirmed their commitment to enforcement of these provisions in the coming months. 

We welcome these important steps forward with civil rights! Little Lobbyists is committed to advocating for the health care, education, and community living rights of our medically complex and disabled children.

To understand the history and importance of Section 504, please read “What Is ‘Section 504? Disability Rights 101” on the Little Lobbyists blog.

For more information on the new rule, please see:

• Fact Sheet from the HHS Office of Civil Rights

• HHS Press Release

• ACL Blog

• YouTube videos from OCR Director Fontes Rainer in English and Spanish

• The Federal Register

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Jeneva Stone is the Little Lobbyists blog manager.

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.

A teenage girl sits in her adapted stroller. She is in an airport, the windows behind her showing blue sky and a boarding chute. A sign in front of her gives instructions for carry-on luggage.

The U.S. Department of Transportation has proposed new regulations that, if adopted, will grant a number of new rights for to disabled passengers on airlines, particularly those who use wheelchairs. These changes are long overdue. Your voice is important! The public comment period ends on April 27.

Our disabled loved ones deserve to fly with dignity and safety. Too often, wheelchairs are damaged or even lost by airlines. Too often, airlines do not give disabled passengers enough information on wheelchair accommodations on planes and assistance with boarding.

U.S. Transportation Secretary Pete Buttigieg wants to change that. If adopted, these new regulations would give disabled passengers the following rights to:

• Choose their own provider to repair or replace wheelchairs that have been mishandled by the airport or airline; 

• Ensure the prompt return of delayed wheelchairs; 

• Receive prompt assistance when disembarking; 

• Have their wheelchair waiting near the airplane’s exit door; 

• Be notified immediately if their wheelchair does not fit on an aircraft;

• Require annual training for airline employees and contractors who physically assist passengers with mobility disabilities and those who handle passengers’ wheelchairs; and 

• Make it easier for the Department of Transportation to fine airlines that violate the rights of disabled passengers.

Make your voice heard! Submitting comments only takes a couple of minutes. Click here to voice your support for these regulations. If you or a loved one has experienced difficulty flying, share your story about what would make flying a safer and more dignified experience for you.

If you think the regulations should go further, such as by requiring accessible bathrooms on planes or adult changing tables in airport bathrooms, share that as well.

Learn more about the proposed regulations in this story I wrote for AFAR magazine. Submit your comments no later than April 27th!

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

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.

Little Lobbyist Simon Hatcher poses with Ady Barkan in a Capitol Hill meeting room. Simon and Ady are seated in different types of wheelchairs. Ady raises his arm to give Simon a fist bump. Simon’s large, shaggy service dog pokes his nose between the two.

Ady Barkan, health care activist and co-founder of Be A Hero, passed away from complications of ALS on 11/1/23. This tribute is adapted from remarks delivered at CareFest in Los Angeles on 11/2/23. 

Like so many who loved him, when I think of Ady, I think of courage.  

In my experience, there are two types of courage.

There is the type of courage where we put on our armor and charge into the battlefield, and there is the type of courage where we strip down and bare our vulnerabilities for all to see. I find most people are one or the other. Very few are both.  

Ady was both. He was definitely both. 

I first met Ady Barkan in the summer of 2017 during the health care repeal fight in Washington, DC. This was shortly after he confronted Senator Flake on an airplane and the video of that conversation went viral.  

This was also when my first-ever visit to Capitol Hill with my daughter and friends accidentally resulted in me starting a national non-profit organization advocating for children with complex medical needs and disabilities: Little Lobbyists.

I can’t remember now if Ady reached out to me or if I reached out to Ady first, but we were united in our purpose from the very start. It was the beginning of many conversations, text messages, collaboration, and schemes to ensure health care for all. 

We attended countless rallies and press conferences together, sharing our personal stories for why health care is a human right and not a privilege. I often stood next to him at these events, with my amazing daughter at my side.  

My daughter, Xiomara, the joy of life, was born with a number of serious medical conditions that affect her airway, lungs, heart, and kidneys. She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to get around and explore the world around her.  

A few years after his diagnosis, Ady would also come to rely on a trach, ventilator, feeding tube, and wheelchair just like Xiomara – all wonderful life-saving supports that allowed them to be able to have meaningful and joyful experiences. 

Ady challenged me, and he let me challenge him: on the power of how we use personal storytelling in the name of advocacy. On how we talk about disability in a way that focuses on access and self-determination. On how politics and policy is part of it all.

Elena Hung is at a podium to the right of a large stage, giving her remarks at CareFest. To the left is Jumbotron with a photo of Ady between two other activists at a rally.

Ady and I were both co-chairs of Health Care Voter, a national campaign to hold elected officials accountable for their votes on health care issues. We traveled across the country – physically and virtually – and reminded voters that we have incredible power with our votes in November. In Washington, DC, we also reminded members of Congress that they work for us, that we elect them to represent us, and if they fail to represent us, then we will vote them out of office.  

I am and will always be incredibly proud of the work that Ady and I, and both of our organizations, have done together. The work that I treasure the most is what we did to put a face on the importance of home and community-based services.  

It was not that long ago that disabled people with complex medical needs – like Ady and Xiomara – were automatically institutionalized.  

That was unacceptable to us. 

We built on the work of the disability activists who came before us, and we were relentless in the pursuit of the goal that disabled people live at home with loved ones instead of in an institution far, far away.

Ady bravely shared – over and over – how essential his caregivers were to ensure the quality of life he had, and to his ability to live at home with his wife and life partner Rachael and their two beautiful children, Carl and Willow. 

Through his storytelling and advocacy, Ady shared the humanity behind his diagnosis, and what is possible when we organize together.

Ady taught us that we can all BE A HERO in the story of how we care for one another. 

It is up to us now.

[If you’d like to share a story about how Ady inspired you, visit Be a Hero’s website. You can also donate to GoFundMe to support Ady’s family.]

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Elena Hung is the co-founder and executive director of Little Lobbyists.

Little Lobbyists pose in a row with the U.S. Capitol Building in the background. It’s a beautiful day, and they wear colorful clothing. The children are very young. Some use adaptive strollers, and some stand.

This week marks the 50th anniversary of the Rehabilitation Act of 1973, which opened doors to jobs, education, independent living, and much more for people with disabilities. The Act also established standards for accessible communication and information technology. 

The Rehab Act (as it’s often called) is the foundation for civil rights for people with disabilities in the U.S., and at its heart is Section 504, which prohibits discrimination on the basis of disability “under any program or activity receiving Federal financial assistance.” Disability rights activist Judy Heumann, who was instrumental in the fight for the Rehab Act, reacted this way, “I read the sentence over again, took my glasses off, rubbed my eyes, and read the sentence one more time … This sentence acknowledged that the way we were being treated was actually discrimination.” 

Until the Rehab Act passed in 1973, people with disabilities had been excluded from the protections of the Civil Rights Act of 1964. No one knows who inserted civil rights language into a bill that had been primarily focused on disability employment, but it changed history without amending the Civil Rights Act. Nonetheless, it would take four more years and a famous 26-day sit-in by disabled activists in the U.S. Health, Education and Welfare offices in San Francisco before Section 504 was finally implemented. 

What’s the Difference Between Section 504 & the ADA?

While most people think of the Americans with Disabilities Act of 1990 (ADA) as the first law that established civil rights for people with disabilities, Section 504 predates it and lays the groundwork for the ADA. 

The basic difference between the two laws lies in how each law guarantees rights. Section 504 prohibits discrimination against people with disabilities who participate in programs funded by the federal government–among these are Medicaid and Medicare, public schools, federal employment, federal buildings and public housing. The ADA builds on 504, extending civil rights for disabled people to everyday life in both the public and private sectors, such as businesses and other parts of government. 

In addition to launching the Americans with Disabilities Act, 504 further impacts the lives of disabled people through the Individuals with Disability Education Act (IDEA) that grants disabled students the right to inclusion, and the U.S. Supreme Court’s Olmstead Decision which determines that disabled people have the right to choose where they live.

What Does This Mean for Our Families Today?

The fight to have the 504 regulations made into federal law was long and bruising–at the time, the very idea of considering people with disabilities citizens with equal rights was tremendously controversial. Businesses and others tried to get rid of Section 504 after the Rehab Act was passed, claiming it would be too expensive and difficult to adhere to. Although disability rights prevailed and 504 remains law, even today, we are still fighting for the rights of people with disabilities to live where they choose, receive basic medical care, and prove that disabled lives have equal value. 

Judy Heumann poses with Little Lobbyist Rob Stone in a bookstore. There are bookshelves behind them, and Judy is signing a copy of her memoir for Rob.

In the 50 years since it passed, Section 504 has never been revisited or revised. Since 1973, though, our society has changed dramatically: the personal computer has become an essential part of everyday life; the internet is available to the public; health care has become far more complex and sophisticated; our disabled children are included in public school; progress has been made in closing institutions; and more and more disabled people live, work, and play in their communities. 

That’s why, this month, the Biden Administration announced plans to revise and strengthen the 504 regulations for the U.S. Department of Health and Human Services. Because it’s about time, and care can’t wait! The legal and social changes of the last 50 years need to be aligned with Section 504.

When the federal government wants to issue new or change existing regulations to current law, it must post a Notice of Proposed Rulemaking (NPRM) in the Federal Register and give the public time to comment. This NPRM on Section 504 makes changes to improve or clarify key areas of nondiscrimination in health care and human services, including:

• Discrimination in medical treatment, especially organ transplant and public health emergencies;

• Accessibility of medical equipment, including exam tables, weight scales, and mammogram equipment;

• Web, mobile app, and kiosk accessibility, so that disabled people can equitable access medical care and check in for appointments;

• Child welfare programs, to prevent discrimination against disabled parents and disabled foster parents;

• Community integration, to ensure that disabled people are able to live in their communities as established by the U.S. Supreme Court’s Olmstead Decision of 1999; 

• Value assessment methods, to prevent the devaluing of disabled lives when physicians and insurers determine who is eligible for treatments, operations, and medications.

We thank the Biden Administration for making progress on civil rights for people with disabilities, and we look forward to these crucial updates to Section 504.

Can you envision a world in which a wheelchair user can be weighed every time they go to the doctor? Or get a mammogram easily? One in which waiting lists for Medicaid programs are a thing of the past? Or one in which disabled lives are always valued the same as nondisabled lives? These updates to Section 504 can help make these dreams a reality.

The Biden Administration is asking for our help to make the proposed changes as effective as possible. If you are a member of the disability community, your lived experience can provide much-needed insight. If you would like to be a part of improving the lives of disabled people and their families, please read through the NPRM, and, if you have a comment or suggestions, submit it at this link before November 13, 2023.

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Jeneva Stone is the Little Lobbyists blog manager. If you have an idea for the blog, or would like to write a post, contact her at: jeneva@littlelobbyists.org!

Grace at Nauset Light Beach in July 2014, wearing a black and purple swimsuit.

This time of year brings back lots of memories of family vacations. Cerebral palsy means that accessibility is a priority on vacation. Our family enjoyed trips to Cape Cod, Maine, and New Jersey when I was growing up. Planning an accessible vacation can be challenging, but it is possible.

Finding an accessible place to stay is often difficult. Growing up, we often stayed with family members when we went away. Many of my relatives have houses that are older, and not built with accessibility in mind. It was easier to navigate inaccessibility when I was younger.  However, it has become more challenging to stay overnight with my relatives as I have become an adult. 

For example, as a child it was easy for someone to carry me upstairs where the bedrooms were. As I grew up, this became uncomfortable and dangerous. I became self-conscious about being carried in front of everyone else as well.

Staying in hotels can be challenging for some people. Many hotels have a certain number of accessible rooms available for guests, so be sure to check in advance. However, meeting accessibility standards and being accessible are often two different things. In my experience, finding a hotel room with a roll-in shower is particularly challenging. Always ask about these issues and others when you book an “accessible” hotel room. 

Accessible tourist attractions are sometimes hard to find. I no longer enjoy going to the beach, despite enjoying it when I was younger. As I have grown, it is much more difficult for me to be carried on the beach. Mobility devices are typically not designed for use in the sand or other rough terrain. 

Grace petting a dolphin at Miami Seaquarium in August 2016

Nowadays, I enjoy indoor attractions such as museums. One of my favorite museums is The National Baseball Hall of Fame and Museum located in Cooperstown NY. The exhibits are accessible, and the museum itself has plenty of room to navigate. Unfortunately, the town of Cooperstown doesn’t have many accessible restaurants or shops–so be sure to do some research in advance about the towns you may visit. Simply googling “accessible travel” plus your destination may yield helpful results.

I also enjoyed the Whydah Pirate Museum located in West Yarmouth MA, which is accessible. It was more interesting than I thought it would be. I enjoyed seeing old artifacts that were only discovered in the 1980s, after the ship’s remains were found.

I also prefer to go on vacations when the destination is easy to get to by car. Several years ago, I went to Florida with my mom and younger sister. We had a wonderful time, but the plane ride was hard for me. During the flight, the differences in altitude caused my spasticity to increase. 

In addition, traveling on a plane is often challenging for disabled people who require mobility devices. Airlines frequently damage wheelchairs when storing them on the plane. I have never taken my wheelchair on a plane, because I don’t want to risk it getting damaged or lost. The U.S. Department of Transportation has a list here of the rights of disabled travelers using airlines, as well as additional travel resources. In addition, Amtrak has significant resources for disabled travelers. 

Vacations are a wonderful way to enjoy the warm weather. Planning an accessible vacation requires creativity and research. You can find groups on Facebook to help you plan and give you ideas for fun vacations! An accessible vacation can leave you with memories that last a lifetime. 

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Grace Dow is a writer from Massachusetts who focuses on disability rights issues. In her free time, Grace enjoys seeing her friends and family. She also enjoys reading, and following her favorite sports teams.

Grace (l) with her sister (r) at Thanksgiving dinner..

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. As the budget process moves forward, here’s what’s at stake for Grace Dow:

I am a writer and disability advocate who has cerebral palsy. On my blog, I share personal stories as well as information about various disability rights issues. In the future I hope to become a published author. In my spare time, I enjoy reading, watching movies and following the Boston Red Sox and Pittsburgh Penguins.

I have Cerebral Palsy and I was born prematurely in India. I rely on a walker and a wheelchair for my mobility. Currently, I have private health insurance and Medicaid. Medicaid provides coverage for home and community-based services. Home and community-based services have allowed me to live in my own apartment since 2020. This was a dream come true for me. I am able to be an active member of my community because of Medicaid. I enjoy going to the movies, the grocery store, sports games, and traveling. None of this would be possible without Medicaid. Without Medicaid I would rely on my parents to provide all of the care I need or risk being forced into a long-term care facility.

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 you?

Grace bending down to touch a dolphin at an aquarium.

Medicaid cuts would be devastating to me. Without Medicaid, life as I know would be gone. I would lose my PCA (personal care assistant) services. Additionally, I would have to move back home with my parents. I would rely on them to provide all of the care I need or risk being forced into a long-term care facility.

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 when you were younger? And how will that affect children today?

IDEA allowed me to attend public school. I loved school and had wonderful teachers. I was fortunate to have a wonderful paraprofessional whom I worked with for a decade. Without IDEA, I wouldn’t have received the support I needed at school. I was able to go on field trips, and participate in all kinds of activities in the classroom.

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.