aca
My 14-year-old son Victor is a really social guy. He loves baseball, arts & crafts, the pool, and listens to any music that helps him get his groove on, especially the Beastie Boys, and Johnny Cash. Yet worry has engulfed me, I’m on edge and uncertain for Victor’s
autism
“The greatest tragedy that can befall a child with Autism is to be surrounded by adults who think it’s a tragedy”. ~ Ellen Notbohm Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards,
ll-statements
The following is a transcript of remarks given at a Press Conference in the U.S. Capitol, hosted by members of the Senate and Protect Our Care, at the closing of Medicaid Awareness Month on April 30, 2019 I’m Jeneva Stone from Maryland and I’m a member of
stoptheshock
The following is the transcript from remarks given on 4/24/2019 at the Stop The Shock Washington D.C. Wait-in hosted by The Autistic Self Advocacy Network. Hello, my name is Laura Hatcher. My son, Simon, and the rest of our family are members of Little Lobbyists. We support
medicaid
I am a mom. When my daughter was born with a heart condition requiring a high level of medical care, I became her advocate. When I realized there were many kids like her, unable to access the resources they need to survive and thrive, I became a leader. The truth
family-advocacy
I’ve been involved in healthcare advocacy work since I was 14 years old, eventually pursuing a Masters in Public Health. Most of my spare time is spent working with patients and families with chronic illness, but you can also find me binging home design and cooking shows on Netflix,
diabetes
It's the eleven year anniversary of my diabetes diagnosis and the government still wants me dead! My brand of insulin costs $340 if I were to be uninsured. That's $0.34 a unit. A unit is ONE HUNDREDTH of a mL. If something seems wrong about
reflections
Medical parents will know exactly where I’m going the second I say the following, “January is coming.” January is easily the hardest month for any medically complex family. In this month it does not matter if we have employer sponsored insurance, private insurance, Medicare or Medicaid—we all are
medicaid
My 7-year-old son Colton is in hospice. Our entire family has been gathered around his bedside for weeks. His health, which had been slowly declining for over a year, rapidly deteriorated the day after Christmas. I’m grateful that he made it to Christmas, my smiling boy’s favorite time
dia
Little Lobbyists know our children with complex medical needs and disabilities will grow up to be adults with complex medical needs and disabilities. This is why legislation like the Disability Integration Act, which seeks to end institutional bias and secure everyone’s right to choose to live in their communities
disability
“Hello, my name is Sandra,” I recorded onto the senator’s voicemail as my own voice cracked. “I am calling you from my son’s Make-a-Wish trip at Disney World.” The tears started down my face. “I beg you to not repeal the Affordable Care Act.” This was January 2017,
family-advocacy
My name is Aidan Abbott, I’m 13 years old, live in Slinger, WI, love to play basketball and my favorite team is the Milwaukee Bucks. I also have a rare disease called Ectodermal Dysplasias. People born with Ectodermal Dysplasias have severe oral and dental issues due to missing teeth.