elections
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
family-advocacy
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
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
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
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
family-advocacy
Adulthood is a challenging time for most young adults and their families. For adults with disabilities and their parents, it’s extra challenging. As an adult with Cerebral Palsy, adulthood has been more challenging than I’d imagined. Luckily, my parents have been supportive. I am lucky to have a
capitol-hill
In 2017, Elena Hung and Michelle Morrison, parents of children with complex medical needs and disabilities (Xiomara and Timmy), were worried about the future of health care, given the frightening rumblings out of Washington DC. The two sat down at a kitchen table and put their heads together: How could
family-advocacy
Little Lobbyists honors the passing of an advocate who changed our children’s lives: Julie Beckett, the mother of Katie Beckett, for whom a crucial Medicaid waiver is named. Julie and Katie Beckett became advocates for people with disabilities because they wanted justice and a good life for Katie and
state-advocates
We find ourselves celebrating our third consecutive World Down Syndrome Day (WDSD) against the backdrop of a global pandemic; though, undeniably, something has recently shifted. While much of the world, and certainly much of the United States, has decided that it is time to turn the page, close the book,
pandemic
As the mother of a medically complex child, I was stunned by a recent Facebook post by a scientist friend who is cautiously advocating for dropping mask requirements in schools. He’s posted the recently released “Urgency to Normal” toolkit. My friend reminds us that he “was all-in at the