Ian's Story: How the Medicaid Health Insurance Premium Payment Program Saves Lives

The Medicaid Health Insurance Premium Payment Program backs up our private insurance to keep Ian safe and thriving.

What Trump's First 100 Days Mean for Medically Complex Children and Their Families

Trump's first hundred days are threatening medical research; critical programs children and families rely upon for survival; and continued access to medical supplies, equipment, and medications.

Introducing Shannon Dingle: Our New Community Engagement Associate!

Hi y’all! I’m Shannon Dingle. My family lives near the heart of Raleigh, the capital city of North Carolina. I’ve spent my entire life in the southern U.S., including Florida and Texas. I’m a single widowed mom of six: Jocie, Patience, Philip, Rob, Joy, and

Unraveling Bias in Healthcare: We Need NICU Advocates (by Anne Louis)

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

Meet Jenny: Our New HCBS Policy Director!

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

#CareCantWait: Reflections from the Bus Tour (By Elena Hung)

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

From Books to Belonging (by Alison Chandra)

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

What I Learned by Advocating with Little Lobbyists (by Anne Louis)

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

Little Lobbyists Families in the News: “Understanding Autism” on PBS (by Jeneva Stone)

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

We Belong: Why Community Integration Matters

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

Know Your Rights: The Community Integration Mandate (by Jeneva Stone)

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

25 Years of Olmstead Rights: James & Jenny McLelland’s Story

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

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Know Your Rights: The Olmstead Decision (by Jeneva Stone & Laura LeBrun Hatcher)

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

federal-issues

Historic News: Prohibiting Disability Discrimination in Federal Programs! (by Jeneva Stone)

“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,

caregivers

Knowing How to Do All the Stuff: An Interview with Kelley Coleman (by Jeneva Stone)

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

our-voice-is-our-power

Be a Hero: In Memory of Ady Barkan (by Elena Hung)

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

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What Is “Section 504”? Disability Rights 101 (by Jeneva Stone)

(Editor's note: edited and republished on 5/13/2025) 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

family-stories

Vacations Can Be Accessible and Enjoyable (by Grace Dow)

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

reflections

Judy Heumann, Rolling Warrior

This week, the disability community lost a great light. Judy Heumann has been called the mother of the disability rights movement, and her life reflected that. She was kind, warm, encouraging to Little Lobbyists families, and, especially to our children.  Her own family, as described in her memoir, Being Heumann:

pandemic

How Do You Stay Prepared? Let’s Talk (by Jeneva Stone)

I can still remember our family’s first encounter with disaster preparedness–or lack thereof–it was the day of 9/11, 2001, and my son Rob was four years old. My husband and I had waved him off to preschool on that beautiful, bright blue morning at our home

Who Has Power? Disaster Preparedness for Our Families (by Stacy Staggs)

Families like ours are nothing if not prepared. As a mom and caregiver to my Little Lobbyists, Emma and Sara Bean, I have plans on top of plans. Emergency Action Plans (EAPs) are a lifesaving requirement for our homes and our schools. Our families have checklists, “go bags” and contingencies.

hcbs

Thank You, Lois Curtis, Olmstead Hero (by Jeneva Stone)

On June 22, 1999, when the U.S. Supreme Court issued its landmark disability rights decision in the case of Olmstead vs. L.C. & E.W., my family was at the beginning of our own disability rights journey. My son Rob had just turned two, and we were struggling

journey-with-jeneva

Share the Journey with Jeneva: Matthew Plantz on the Importance of Community Inclusion

Our children with complex medical needs and disabilities will grow up to become adults with disabilities, so it’s important that we, as Little Lobbyists families, listen to disabled adults. Those of us who are parents may not have experienced life with a disability until our child did—who better

101-series

The ENFit Transition: Advice and Information for Families (by Jeneva Stone)

My son Rob is a 25-year-old artist and activist. He’s survived and thrived in his community because he has had access to enteral (or “tube”) feeding for all of his nutrition, hydration, and medication needs since the age of two. Tube feeding isn’t shameful; it’s just another