Small Voices, BIG Impact: Little Lobbyists Takes on Harrisburg!
Cole's mom writes about the electric mood at the Harrisburg, PA, stop on the "Sick of It! Fix Health Care Now" bus tour.
Little Lobbyists Files Amicus Brief in Defense of the Affordable Care Act in the Supreme Court
Little Lobbyists, a family led group advocating for children with complex medical needs and disabilities, has joined 18 other national disability rights organizations in filing an amicus brief in the Supreme Court defending the Affordable Care Act (ACA).
Sharing the Journey with Jeneva: Moving Forward with Ken Capone
Ken Capone, is the Director of People On the Go of Maryland, a statewide self-advocacy organization for people with disabilities. The Maryland State Assembly often turns to Ken to elucidate disability issues in its legislative deliberations.
Sharing the Journey with Jeneva: Samantha McGovern COVID-19 Thoughts
Josephine was a micro-preemie, born at exactly 24 weeks gestation, 1 lb., 12 oz., and 12 inches long. She was the size of six pieces of butter. As a result of her early birth Josephine had poor lung development.
Disability Community Asks for COVID-19 Response Legislation
As Congress moves to pass legislation to ease the strain on families across the country, it is critical that they also move to protect and support the rights and safety of people with disabilities, including children with complex medical needs and disabilities.
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: