DC Week of Action (and Joy)
Little Lobbyists' intern Grace Heuer writes about taking the fight to Capitol Hill...and rethinking what advocacy can look like.
Novel Coronavirus Response Must Include Affordable, Equal Access to Treatment for ALL (by Yasmin Canales)
Since birth, I have had over 30 hospitalizations for weeks at a time as well as 15 surgeries. I take 21 different medications, including over 35 pills daily, and 2-4 hours of intense respiratory therapies.
Sharing the Journey with Jeneva: Liz Randolph on When a Feeding Tube Is Forever (And That’s OK)
The psychosocial needs of young adults are not being met in either setting, pediatrics or adult care, currently. Our healthcare system is in desperate need of help.
Four Little Lobbyists Moms Share State of the Union Experience
Last week four of our Little Lobbyists families were honored to attend the State of the Union, representing all of our families of kids with complex medical needs and disabilities. We asked them to share their experience with us.
Sharing the Journey with Jeneva: Laura Robeson on Medicaid Expansion
Danny loves meeting people and seeing his friends at the grocery store, library, and swimming pool. Danny truly connects with people and builds community.
Medicine is only life saving if we can afford it. (by Tasha Nelson)
A medication is only life-saving in use if it is accessible to the patient. If I can’t afford it, Jack can’t benefit from it.
I Wish I Were a Battery (by Jeneva Burroughs Stone)
I do wish I could recharge by being plugged in. That would be so much easier than plowing through all the hanging fronds and threads of suggestions about self-care.
To my son, on the eve of his first day of kindergarten (by Ali Chandra)
Instead of college, I quietly, carefully let myself hope that you’d take a step one day.
Any of Us Could Be a Refugee (by Jeneva Burroughs Stone)
My own son is 22; on 9/11, Robert was only 4 years old, a Buzz Lightyear fan enrolled in preschool. Our family lives in Bethesda, Maryland, and we were face to face with fear that day:
Affordable Healthcare is the Bedrock of American Self-Reliance (By Jeneva Stone)
I wanted more: The ability to live how I wanted to live. The freedom to do what was best for my family.
The Power of Medicaid (by Jeneva and Robert Stone)
Unlike private insurance, Medicaid is designed for people with disabilities: It provides all 30 boxes of medical supplies Rob needs every month. His specialty medications are covered. His therapies are covered.
Keep Health Care in Mind When You Vote (by Jodi Aleshire)
Now, you may be saying "if it costs so much, just suck it up and get health insurance. It's not the government's fault that you don't -" yeah, I’m gonna need you to stop.
My Son is in Hospice and his Healthcare Matters (by Tonya Prifogle)
As Colton became more ill, he needed more pain medication to remain comfortable. The prescription was written, but when we tried to fill it the medication was denied.