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
family-advocacy
“Hey there”, my email to our enteral supplier began in as friendly a tone as I could muster, “We received my son’s tube-feeding supplies and after his home health aide went to hang one of the bags, she realized that the wrong feeding bags were sent. We usually get
I’ve had some reasons for optimism about the pandemic, including the development of vaccines and treatments, but my community is still in danger, and it seems that nondisabled folks care less and less. I can remember the early days of the pandemic, thinking that nondisabled people might finally understand
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
101-series
(Editor's note: edited and republished on 5/13/2025) Rob Stone is an active member of Little Lobbyists. Rob’s goals upon leaving high school were to become a health care and disability rights advocate, and an artist with his own art website. Rob has a rare disease,
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
reflections
Disability Day of Mourning is an annual commemoration held on March 1st to remember the lives of people with disabilities murdered by their caregivers, particularly those killed by parents and other family members, and to demand justice for their deaths. Our executive director, Elena Hung, spoke at today’s vigil