
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.
The Medicaid Health Insurance Premium Payment Program backs up our private insurance to keep Ian safe and thriving.
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.
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
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
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
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
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
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
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
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
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
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
101-series
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
“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
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
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
101-series
(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
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
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
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
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
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
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
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