reflections
I still remember my first event with Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities. My son Rob wasn’t with me that day--he was enjoying one of his last precious days of public school, which he loved. I’d gone to Capitol Hill
reflections
On Thursday, June 17, 2021, the U.S. Supreme Court upheld the Affordable Care Act (ACA), and I breathed a huge sigh of relief. I've lost count of how many times I have metaphorically held my breath while waiting to find out if the ACA, which ensures my
reflections
With vaccines on the horizon for teens and younger children this summer and fall, the end of the pandemic may be close enough to grasp. How will you seize the moment as an advocate? These last weeks, I’ve been reflecting on my own plunge into state and federal advocacy,
reflections
As parents of children and young adults with disabilities, we should always work to be better allies. Being an ally means empowering our kids and asking ourselves some challenging questions: Are we letting our children speak for themselves? Are we giving them the means and the platform to become their
reflections
I first heard Sister Simone speak at the Women’s March in Washington D.C. on January 21, 2017. Like many people on that unseasonably warm winter day, I’d never been to a protest march before. I was unsure what to expect, and uncertain if I belonged. As I
family-advocacy
We must end police violence against Black Americans, and against all people of color, and people with disabilities. The U.S. House of Representatives recently passed the George Floyd Justice in Policing Bill of 2021, which, if enacted, would ban chokeholds and end qualified immunity for police officers. Police violence
family-advocacy
Like all of us, Laura Hatcher, our Director of Design & Communications, and Jeneva Stone, our Blog Manager, have had to figure out how to make these December holidays as jolly and bright as possible, given the challenges of the present moment. We had some ideas we wanted to share,
reflections
March 2007: My sixty-six-year-old father is rushed to the hospital after surviving a fairly major heart attack while living in another country. I fly to the city where he is, assess the cramped and disjointed medical infrastructure and immediately initiate plans to Medevac him home for care. He tells me
reflections
I love the sound of my daughter's voice. Like any mama who adores her kiddos, the sweet, small sound of their voices are music to my ears. My twin girls, Emma and Sara, will celebrate their 7th birthday later this month. They are happy, rambunctious, curious and remarkably
federal-issues
As far back as I can remember, I have always found ways to express myself that others can understand. It is why I escaped the discrimination others still endure. I have significant motoric, and speech, disabilities due to cerebral palsy. On the wall of my office hangs a piece of
reflections
As the mother of a young man with complex medical needs and disabilities, health care means peace of mind: knowing that Rob’s medical and adaptive needs will be met. That Rob can take advantage of technology and medical advances, such as his augmentative and alternative communication (AAC) device. Rob’
health-care
It has been three years since I co-founded Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities. We formed because the health care that helped kids like my daughter Xiomara survive and thrive was under urgent threat. Along with an incalculable army of organizations and